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BEATING ROSACEA:
Vascular, Ocular & Acne Forms
Dr. Geoffrey Nase
Ph.D. Microvascular Physiologist
Nase Publications
A Must-Have Guide to Understanding
& Treating Rosacea
Indianapolis, Indiana, U.S.A.
Editor: Geoffrey Nase, Ph.D.
Assistant Editors: Ron Vivio, Carol Vivio, Yvonne Shearer, and
Jennifer Nase
Printed and bound in the United States of America
I am a Ph.D. Microvascular Physiologist who does biomedical research at a major medical university. I am a scientist and a rosacea sufferer. I am not a medical doctor and cannot treat patients or prescribe medication. "Beating Rosacea: Vascular, Ocular and Acne Forms" is intended to be educational and is not a guide to self- diagnosis, self-medication or self-treatment. A reliable diagnosis and medical treatment can only be made by a physician.
The author expressly disclaims responsibility for any negative effects directly or indirectly attributable to the use or application of any information contained within this book. Any use of the information set forth herein is entirely at the reader's discretion. Please do not use this book if you are unwilling to assume the risk. It must be stressed that there are many forms and stages of rosacea and therefore a physician or other qualified health professional must be consulted prior to commencement of any treatment regimen. It is a sign of wisdom, not cowardice, to seek a second or third professional opinion.
Published by Nase Publications
Copyright © 2001 by Geoffrey Nase, Ph.D.
All rights reserved. No part of this publication may be transmitted or reproduced by any means whatsoever, whether electronic or mechanical, which includes photocopying, photographing, aural or written recording without the written consent and permission of the publisher.
Additional copies may be ordered from: www.drnase.com
INTRODUCTION
Twenty-four hours in the life of a rosacea sufferer 1
From mild to severe rosacea - the progression of my symptoms 4
The medical research that helped me treat my rosacea 9
The clearance of my symptoms 10
My personal experience with rosacea sufferers 10
Quotes from rosacea sufferers 11
My experience with past health ailment - comparison to rosacea 19
My curriculum vitae 22
The goals of this book 25
GENERAL INFORMATION ON FACIAL ROSACEA
Chapter 1: Confusion and hopelessness 28
General confusion over rosacea 28
Confusion over rosacea treatment 29
Hopelessness for the rosacea sufferer 32
Weeding through the confusion and uncovering hope 35
Chapter 2: Rosacea is a disorder of the facial blood vessels 37
What is unique about rosacea blood vessels? 39
Chapter 3: The stages of rosacea - progressive changes in facial blood vessels 41
TABLE OF CONTENTS
BOOK #1:
DETAILED INFORMATION ON ROSACEA CAUSES AND TREATMENT
Moderate rosacea 42
Severe rosacea 42
Chapter 4: Facial flushing is the first symptom and primary cause of rosacea 44
Facial flushing is the first and universal symptom of rosacea 44
Facial flushing gets worse over time 45
Why does facial flushing get worse over time? 46
Why is flushing localized to the face? 47
Chapter 5: Triggers for facial flushing and rosacea progression 51
Extremely Important Triggers 51
Nerves 51
Skin irritation 60
Moderately Important Triggers 78
Sun 78
Environment - heat, cold and wind 81
Topical steroids 83
Immune system 87
Free radicals 89
Stress - neural and hormonal 90
Menopause 92
Oral dilators - foods, beverages, medications and supplements 93
Exercise 96
Minimally Important Triggers 97
Other disease 97
Collagen breakdown in the facial skin 100
Gastrointestinal tract disorder 101
H. Pylori of the stomach .. 103
Triggers That Are Not Important 104
Facial demodex mites 104
Facial bacteria 104
Facial yeast 105
Skin or systemic infection 106
Sebaceous gland, skin lipid or hair follicle disorders 106
Bad facial hygiene 107
Bad blood 107
Liver disorder 108
Psychological disturbances 108
References 109
Chapter 6: Side effect of facial flushing and abnormal blood vessels 118
Papules and pustules 118
Swelling 119
Burning 120
Rhinophyma 122
Alterations in skin barrier function and structure 123
References 123
Chapter 7: Recipe for rosacea 126
Introduction 126
Rosacea is usually caused by several factors 127
Most common combinations of triggers for rosacea development 127
As rosacea progresses, triggers pile on 127
References 128
Chapter 8: Effect of depression and anxiety on rosacea 129
Introduction 129
Rosacea and depression 129
Rosacea and anxiety 132
Effect of depression and anxiety on rosacea symptoms 133
References 134
Chapter 9: Common misconceptions that general physicians have about rosacea 136
Rosacea is a disorder of skin microorganisms and sebaceous glands 136
Most rosacea sufferers are in the mild stages of the disease 136
Rosacea does not affect people until they are in their 40's or 50's 137
Rosacea is a trivial cosmetic disease 137
General physicians understand what rosacea sufferers go through on a daily basis 138
Most rosacea sufferers just have one or two triggers for flushing 139
References 142
TREATMENT INFORMATION ON FACIAL ROSACEA
Chapter 10: Rosacea treatment by therapy type 144
Warning 145
Oral therapy (prescription) 145
Topical therapy (prescription) 157
Laser therapy 162
Skincare therapy 177
Nutritional & herbal therapy 187
Surgical therapy. 195
Preventive therapy 198
Worthless therapy 198
Dangerous therapy. 199
References 199
Chapter 11: Rosacea treatment by symptom 209
Introduction 209
Facial flushing 210
Facial redness 214
Facial papules and pustules 214
Facial burning 215
Facial swelling 216
Rhinophyma 217
Steroid-induced rosacea 218
Rosacea fulminans 220
Rosacea and extensive sun damage 220
Rosacea and perioral dermatitis 220
Rosacea and acne 221
Rosacea and seborrheic dermatitis 221
Rosacea and depression/anxiety 222
References 224
Chapter 12: Just around the corner - flushing therapy with topical nitric oxide
blockers & nerve inhibitors 227
Introduction 227
Topical nitric oxide blockers 227
Nerve inhibitors 232
References 235
Chapter 13: Common misconceptions that general physicians have about
rosacea treatment 239
Most rosacea sufferers are well-controlled by standard treatment regimens 239
Topical 1% hydrocortisone is safe to use for extended periods of time 240
Rosacea sufferers can use most dermatologist-recommended cleansers,
moisturizers and sunscreens 240
Rosacea sufferers should fight through treatment-induced irritation because
their skin and blood vessels will adapt 241
References 241
GENERAL INFORMATION ON OCULAR ROSACEA
Chapter 14: General information on ocular rosacea 243
Introduction 243
The basics of the eye 243
Primary cause of ocular rosacea 244
Secondary causes of ocular rosacea 244
Aggravating factors in ocular rosacea 246
Ocular rosacea terminology 246
References 246
TREATMENT INFORMATION ON OCULAR ROSACEA
Chapter 15: Treatment information on ocular rosacea 248
Introduction 249
Topical therapy (non-prescription) 249
Topical therapy (prescription) 253
Oral therapy (prescription) 257
Nutritional therapy 259
Laser therapy 260
Surgical therapy 260
Miscellaneous therapies 262
References 263
BOOK #2:
BASIC INFORMATION ON ROSACEA CAUSES AND TREATMENT
GENERAL INFORMATION ON FACIAL ROSACEA
Chapter 16: General information on rosacea 267
Introduction 267
The four stages of rosacea 267
The nine major symptoms of rosacea 268
Facial flushing is the heart of rosacea 268
Facial flushing leads to blood vessel changes and rosacea progression 269
The nine main triggers for facial flushing and rosacea progression 269
Rosacea is caused by a combination of factors 272
Common misconceptions about rosacea - things that do not play a role in rosacea 272
TREATMENT INFORMATION ON FACIAL ROSACEA
Chapter 17: Treatment information on rosacea 273
Introduction 274
Step 1 - Start with the basics 274
Step 2 - Find a qualified physician 275
Step 3 - Eliminate important flushing disorders and triggers 276
Step 4 - Basic rosacea therapy 276
Step 5 - Advanced rosacea therapy 284
GENERAL INFORMATION ON OCULAR ROSACEA
Chapter 18: General information on ocular rosacea 288
Introduction 288
The basics of the eye 288
Primary cause of ocular rosacea 289
Secondary causes of ocular rosacea 289
Aggravating factors in ocular rosacea 290
MY FUTURE PLANS
Chapter 20: My future plans for rosacea research and publications 299
My personal goals and objectives 299
Increase rosacea awareness 299
Clear up misconceptions and erroneous theories that surround rosacea 299
Publish journal articles and medical textbook chapters on rosacea 299
Recruit skin flushing experts 300
Help organize laser treatment protocols for better clearance of facial flushing 300
Help stimulate new rosacea research 300
Develop the most comprehensive internet web site on rosacea 301
Start publication of a quarterly report: "Updates in rosacea research and treatment" 301
Concluding remarks … 302
My mission statement 302
PHOTO SECTION …………………………………………………………………………………………..303
TREATMENT INFORMATION ON OCULAR ROSACEA
Chapter 19: Treatment information on ocular rosacea 291
Step 1 - Find a qualified physician 292
Step 2 - Basic ocular therapy 292
Step 3 - Advanced ocular therapy 295
INTRODUCTION
TWENTY-FOUR HOURS IN THE LIFE OF A ROSACEA SUFFERER
After turning off my alarm clock, I roll out of bed and make my way to the bathroom. Once inside the bathroom, I turn on the lights and slowly approach the mirror. The reflection in the mirror is quite depressing; my face is fire-red and visibly swollen. It looks like I have a bad case of sunburn. After closer inspection, I realize that a dozen inflammatory bumps have popped up on my cheeks, and broken blood vessels are now coursing through the center of my face. "What is going on with my face? It's physically changing right before my eyes!"
After inspecting my rosacea for a few minutes I enter the shower and begin my morning routine. I have to be very careful in the shower though, because cleansing usually aggravates my facial skin. My face is so sensitive that I can only cleanse with plain water. Even with this gentle approach, my face usually flares after showering. This morning is no exception — my face turns bright red after my shower. To add insult to injury, my facial skin starts to physically burn. I wish that I could use a moisturizer to relieve the burning sensation, but my face reacts to all moisturizers; so I banish this thought from my mind, and continue along with my morning routine.
Before I step out of the bathroom, I must also brush my teeth. For normal people, this is a simple, painless task. However, my face is so tight and inflamed that vibration from the toothbrush can trigger a facial flush and worsen my burning sensation. So, like most mornings, I squeeze my toothbrush in sideways, and use very small, gentle strokes in order to avoid facial aggravation.
After finishing up in the bathroom, I peek outside to see what the day has in store for me. It looks like a beautiful day. The forecast is for pure sunshine with temperatures in the middle 70's. Although this weather is ideal for most people, this 'beautiful day' poses two threats to my rosacea. The first threat comes from direct sunlight (a few minutes in the sun triggers intense facial flushing), and the second threat comes from external warmth (warm environments over 72 degrees aggravate my facial blood vessels). Needless to say, summertime is no longer very much fun for me. I then reminisce about how much I used to love this weather playing outside all day long, going to the beach, walking in the park, fishing on the lake, playing basketball, baseball, and football. "I really do miss those carefree summer days!"
Anyway, I need to get some breakfast. My mouth is watering for a hearty breakfast like scrambled eggs and bacon, or pancakes with sausage. But, I can't eat either of these meals without flushing for at least an hour; so I just settle for some plain cold cereal. Oops, I almost forgot, I need to run out to my car to turn on the air conditioning so that the inside is not hot and stuffy. It usually takes my car about 15 minutes to cool down, so I need to start this process before I sit down to eat breakfast.
After breakfast I am frustrated because my skin is still inflamed from the shower. I wish that I could just wake up in the morning, hop in the shower, and run out the door, but my rosacea never allows me to do this. I have to be very patient with this disorder. I have to remind myself not to rush through my morning routine because physical or mental exertion makes my rosacea worse. This is something that I have learned over the years — rosacea doesn’t listen to me or respect my schedule — I have to listen to it and respect it, or I pay for it and recovery takes longer.
My Rosacea
Well, I am finally off to work. As I am driving through the morning traffic I run the day's upcoming events through my head. I have a very busy day. I have to attend a morning seminar and a faculty meeting, and I need to work on my . . . but, all of a sudden, my thoughts are interrupted by a burning sensation on the left side of my face. I think to myself, "What now..?“ I soon realize that the sun is hitting my face, and although my window is up and the air conditioning is on high, this incidental sunlight is causing a facial flare. This reaction is extremely frustrating. "It just doesn't seem fair!" Once again, I must be submissive to this trigger, so I pull my sun visor down and shift my body away from the sunlight. After controlling the situation, I wonder how this could be happening to me when just a few years ago I could play full-court basketball outside in the mid-day sun with temperatures in the 90's. The sun used to feel so good on my face. "Anyway, it looks like those days are long gone.”
As I turn into my work's parking lot, I mentally prepare for the walk I have ahead of me — I have to walk about 10 minutes to get to my physiology lab. Although this is a relatively short walk, it always induces a facial flush, no matter how slowly I go. This aspect of rosacea is also very frustrating; any form of mild physical activity goes right to my face. So, I just suck it up and pace myself. Well, after only three minutes of walking, I feel my nose pulse with blood, and my cheeks start to get warm and burn. The longer I walk, the worse it gets. I try to block it out of my mind, but the facial throbbing and burning sensations are quite bothersome. After arriving at my lab, I immediately crank down the air conditioning. "Ahhhhh that feels heavenly.”
My morning schedule involves going to a departmental seminar and a faculty meeting. Both are very important to my job; but both the seminar room and the faculty conference room are warm with no air circulation. So, I decide not to go. I can't afford to challenge the rosacea beast this early in the day or I could flare intensely and be non-functional for the rest of the day. So, I stay in my perfectly controlled environment and get some work done. I relax in my cold lab for a few hours, almost forgetting that I have this horrible vascular disease.
If I stay sedentary in a cold room, and don't mentally exert myself, I am relatively fine. "That's really quite depressing...."
The Afternoon Hours:
Desperate Attempts to Avoid Flushing Triggers
It is now lunchtime. Some of my co-workers stop by to see if I can join them for lunch. There is one problem though; they want to eat outside in the courtyard. I wish that I could eat outside on this beautiful day, but my face can't stand the sunshine or the heat ~ so I tell them that I don't feel up to eating outside. After some discussion among themselves they suggest an alternative luncheon spot, the medical school cafeteria. "O.K. I can do that. "
So, we leave for lunch. However, as we start walking towards the cafeteria, they decide to take a short cut - they start to walk outside. My brain instantly sends a silent distress signal to my body, "Whoa.... wait a second..... you can't walk outside right now your unprotected face can't stand one minute of strong sunshine." So, before opening the door to go outside, I hesitate "Should I tell them that I can't walk outside in the sun right now without flaring for several hours? Should I tell them about my flushing reactions to heat and warm rooms? If I told them how sensitive my face was and how quickly it reacted to these triggers, would they understand? Could normal people without rosacea ever truly comprehend all of the triggers that I have for facial flushing? If I told them everything that I had to go through each day to survive this disease, they would probably think I was nuts!" After this quiet contemplation, I decide to tell them a white lie in order to avoid walking outside. I tell them that I have to run a quick errand and will meet them in the cafeteria in a few minutes.
After they leave I go underground into the tunnel system and scurry through to the cafeteria. Upon arriving at the cafeteria, I realize that I am famished. However, my hunger is quickly suppressed by the realization that I can't eat anything on the menu without turning bright red in front of them; so, I just order a plain salad and some ice water. To make matters worse, the cafeteria is slightly warm, forcing me to suck on ice chips throughout most of my lunch in order to prevent warm room-induced flushing.
After finishing lunch, I rush back to my lab in order to prepare for a doctor's appointment — I have to retrieve all of my medical records, and then cool down my car prior to leaving. When I arrive at the doctor's office I immediately search for a seat directly under an air conditioning vent. After a few minutes of cooling down, the doctor sees me. I walk into the examining room and am hit by warm, non- circulating air. The thermostat shows 73 degrees. That is much too warm for me — but I might as well show him my full facial flush. He then proceeds to examine me. He is very friendly and very caring. He really wants to help me. But, like all my other doctors, he is stumped. He cannot do anything to alleviate my flushing episodes, my red-inflamed face, or my burning sensations.
I leave the appointment more frustrated than ever. I go outside and get directly into my car (which is now hot from the sun beating on it). As I start the engine, I think to myself, "I just don't care anymore. I refuse to wait outside in the shade for 15 minutes while the car air conditioning kicks in. I don't care if I flush. I am fed up with this disease! I will just stay fire-red and burn. I JUST DON'T CARE." But, as I am sitting in my hot car, my face turns neon- red and starts to physically hurt. This Dr. Jekyll and Mr. Hyde conversion takes place in less than 30 seconds. This flare jolts me back into reality; "I have to take care of myself. I have to avoid my triggers. I have to cool down my car before I get into it" I then break down and sob. I am so tired of avoiding all of my flushing triggers. I am so tired of this treatment plan. Every hour that I am awake I have to scramble to stay ahead of this disease. Every single hour! If I could just transfer my burning, fire- red face to some of my doctors for one day, they would have a new respect for this disorder.
On my drive back to work I reminisce about the days when I did not have rosacea. I used to love the outdoors. I used to love being around people. I used to love life. Now, I just want to live by myself inside my cold apartment in order to control the rosacea beast. When I don't do everything near-perfectly, my face physically changes, and my flushing and burning episodes become debilitating.
I finally get back to my lab and catch up on some work. After finishing up for the day, I drive home. But on my drive home, inside a temperature- controlled car, I start to feel an uncomfortable wave of heat rise up my neck and rush into the center of my face. My nose throbs. My face burns. I am experiencing a spontaneous flush. There are no identifiable triggers for this spontaneous flush — it happens all by itself. This flush is very disheartening because there is no way to predict it, and there is no way to avoid it once it starts. The only thing that I do know about this flush is that it happens every day, usually in the late afternoon or early evening hours. This flush even occurs on stress-free weekends when I am taking it easy watching movies and keeping cool. During these episodes my face is very uncomfortable, so I usually just sit back and let the flush run its course -I just suck it up and wait it out.
During my drive home, I think to myself how badly I need to relieve some of this rosacea-induced stress. But, as quickly as that thought enters my mind, it is replaced by anguish. Not only does rosacea cause stress, but it has severely reduced many of my stress-relieving activities such as basketball, baseball, golf, exercising, weightlifting, and walking (all of these are now moderate to severe triggers for flushing). Moreover, I can't just go home and lie down on the sofa and relax because if I lay my head down during a flushing episode, even more blood rushes to my face. "ARRRGGhhhh."
The Nighttime Hours: Pure Exhaustion
When I get home, I am in terrible shape. I try to put on a fake smile because I don't want to worry my loving wife, Jennifer. My forced smile does not fool her though because she can always tell how badly I am doing by just one glance at my inflamed face. Jennifer just wants me to feel better and suggests that we go out to get a bite to eat and relax. But, going out to restaurants is a nightmare, from the food and beverage, to the indoor heating. She then gives me another option and suggests that we go outside for a nice walk. She states, "Jeff, the sun is going down and it's cool outside now". But, she doesn't realize
Introduction
My Rosacea
that I am still hurting from the spontaneous flush I experienced on my drive home and that any exercise, even in a cool environment, will exacerbate my flush and delay my recovery. So, she gives me a third option, suggesting that we just snuggle together on the couch. My stomach turns. I want to hold her so badly right now. I really do. I need to. But, I can't right now. I tell Jennifer, "I love you dearly and I would love to snuggle with you, but I can 7 handle any heat from your body not right now I am sorry.... I am so sorry that I can't do much of anything." I think to myself how truly blessed I am to have someone like her. She has stuck by me through these very trying times. She has put up with me and my rosacea beast.
So, when my spontaneous flare finally subsides, leaving behind my permanently inflamed face, I eat dinner (some cold chicken and plain salad). After finishing the small meal, I prepare for my nighttime shower. This is usually quite hard on my rosacea because my facial blood vessels are extremely hyper reactive by the end of the day. Like my morning shower, I am extra gentle to my face — I just rinse my face with cool water. But, after showering my face looks terrible and feels like it is on fire. It throbs once again and hurts to the touch.
After my shower I am tired and just want to go to bed. But my rosacea dictates when I can go to sleep. I have to wait until most of my flaring and burning decrease for me to even approach my bed. Sometimes I am flaring until three or four in the morning. The only thing that relieves the facial burning and throbbing is an oral painkiller (codeine) that was prescribed for me. Tonight I take the painkiller because I want to get some relief and fall asleep.
Before going to bed, I crank down the air conditioner to a chilly 65 degrees. I then position a fan so that it blows directly onto my face. Lastly, I prop up three pillows to elevate my head so that blood does not rush to my face. Before going to sleep I pray to the LORD above to give me strength and forgive my sins. I thank HIM for all of the gifts that HE has given me; although I am going through hard times, HE has truly blessed my life. I know that
HE will guide me through these trying times. Although I feel better after my prayers and notice that my facial burning and throbbing are now subsiding due to the oral pain killer, I can't help but feel
depressed about tomorrow After a few hours of
sleep, I will be facing the same exhausting day that I did today!
The above description, "Twenty-Four Hours in the Life of a Rosacea Sufferer" depicts a typical day that I encountered during the severe stages of my rosacea. This occurred every day for over nine months. Every waking hour was a challenge for me. Everything I did seemed to evoke facial sunburn like reaction. My quality of life was very poor.
My rosacea was not always that severe. In fact, it started out quite innocently
FROM MILD TO SEVERE ROSACEA:
THE PROGRESSION OF MY SYMPTOMS
Before I describe my particular case, the reader must first have a basic understanding of the different stages of rosacea. Rosacea can evolve through four general stages:
Pre-Rosacea
In general, people who are prone to frequent bouts of facial flushing and blushing are placed into this category. At this stage, facial redness from the flush or blush is very transient, immediately disappearing after the trigger is over. For example, a transient flush to a warm environment, exercise, emotional stress, facial cleansing, or an embarrassing situation, can all be categorized as pre-rosacea flushing.
Mild Rosacea
Mild rosacea begins when the flush-induced redness persists for an abnormal length of time after the trigger is over - at least a half-an-hour or more after the trigger. Many rosacea sufferers at this stage also complain of sensitive skin that becomes flushed after application of facial cleansers, cosmetics,
Introduction
sunscreens and anti-acne products. Upon close inspection, thin red lines (broken blood vessels) may be visible in certain areas of the face.
Moderate Rosacea
Moderate rosacea begins when the facial redness persists for days or weeks, often times becoming semi-permanent in the central areas of the face such as the nose and cheeks. This results in a generalized 'sunburned' look. In facial areas where chronic flushing is intense, swelling and burning may also occur. A significant number of patients also report outbreaks of inflammatory papules (tiny red bumps) during this stage. In facial areas where flushing is prominent, numerous broken blood vessels are often seen. In addition to facial rosacea, patients in this stage may also experience eye symptoms such as ocular irritation, dryness, crusting, sensitivity to light, foreign body sensation, swelling of the eyelids, and loss of eyelashes.
Severe Rosacea
A small portion of rosacea sufferers progress to the final stage of the disorder which is characterized by severe bouts of facial flushing, inflammation, burning, and swelling. At this stage, facial inflammation may become quite severe and cause painful skin sensations. On top of the inflammation can emerge crops of inflammatory papules, pustules, and nodules, some patients may also develop rhinophyma (rino-fi'-ma), a bulbous enlargement of the nose.
General Comments on My Rosacea
I am a healthy, normal human being. I have been examined by over 60 physicians and have undergone a battery of tests, but nothing was ever found to be 'physically' or 'psychologically' wrong. General physicians and dermatologists referred to me as a 'mystery patient' because they could never put a real dent in my flushing disorder or rosacea symptoms. I felt alone. I thought that I was alone.
Today, with my current knowledge of rosacea, I know that I am not alone. I am not a 'mystery'
patient or a 'one-in-a-million' patient. I belong to a large, lonely group of rosacea sufferers whose facial blood vessels are highly reactive, and dysfunctional. It is no mystery that physicians could not find anything wrong with me because there are no tests to evaluate the cause of rosacea, or pinpoint the underlying flushing mechanism(s).
Pre-Rosacea:
The First Stage of My Flushing Disorder
As far back as I can remember, I experienced classic pre-rosacea symptoms. During my childhood years, my face used to flush very easily to warm environments and physical activity. I was one of those kids who was constantly running around with a rosy glow. During my high school years, I also experienced pre-rosacea symptoms; activities such as basketball, baseball, and football usually triggered mild flushing. In addition, oral class presentations often triggered mild facial blushing. At this stage, my flushing was not bothersome at all; my face just had a 'healthy glow' during bouts of flushing. Everything else was normal. I did not have sensitive skin, burning sensations, papules, pustules, or acne. That was the extent of my disorder throughout my childhood and teenage years. I had a classic case of pre-rosacea — brief bouts of facial flushing that dissipated immediately after the trigger was over. It started out quite innocently.
Mild Rosacea:
The Second Stage of My Flushing Disorder
The first symptoms of 'true' rosacea started during my first year of college. That was the official start date for my rosacea (I was 18 years old). During my freshman year, I noticed several changes in my flushing episodes. First, exercising in the gym caused a pronounced flush on my cheeks and nose that lasted for 30 to 45 minutes after my workout was over. Second, after baseball practice or games, the center of my face would have a rosy glow for about an hour. Third, my face started to flush to alcoholic beverages and this flush remained visible for several hours.
My Rosacea
During this time period, I noted other minor changes. For instance, during skiing events my face would turn bright red and stay that way for three to four hours after I retreated into the lodge. Although there were many other red faces in the lodge, mine was always much brighter, and usually lasted longer than the others. It was an 'exaggerated' flush. I also started to blush more intensely during class presentations (this blushing was annoying because it affected my concentration). Lastly, sun exposure now resulted in minor burning prior to tanning. This was strange because I never used to burn to sun exposure.
That was the extent of my disorder throughout my college years (from 18 to 22 years old). Everything else was relatively normal. My face was not sensitive to cleansers, sunscreens or moisturizers. My face did not burn or sting during bouts of mild flushing. I had a nice healthy complexion that was pimple-free. The facial flushing was annoying, but it did not affect my lifestyle. I had a classic case of mild rosacea — a flushing response that stayed on my face for twenty minutes to one hour after the trigger was over.
Moderate Rosacea:
The Third Stage of My Flushing Disorder
My disease waxed and waned for several months after college. Approximately four months after college, my rosacea worsened. I was now entering the moderate stage of rosacea, signaled by increased sensitivity to skincare products, increased flushing intensity, permanent patches of facial redness, and the development of inflammatory papules.
The first change that I noticed was an increased sensitivity to skincare products. The gentle cleansing bar that I had been using most of my life was now causing facial redness. Furthermore, I was not able to use sunscreen on my face because application of the sunscreen caused intense facial redness. In fact, I could not find a single sunscreen that did not irritate my face; I even reacted to four different baby formulas that were made for the 'most sensitive skin'.
The second major change that I experienced was an increase in the intensity and duration of my flushing episodes. Exercise, weightlifting, aerobic
activity and certain foods/beverages caused intense and sustained flushing. Not only were these noticeable to myself, but other people often commented on them.
The third major change I remember taking place was the emergence of permanent areas of facial redness. Upon close inspection, I could make out several patches of red on the apple of my cheeks, and the tip of my nose.
At the age of 23 I entered graduate school. By this time rosacea weighed heavily on my mind. I was dismayed by the fact that I could not cleanse my face without major irritation. Each time I irritated my skin, numerous red lines (broken blood vessels) popped up in the areas of inflammation. Not only was my face irritated and blotchy, but I also started to develop inflammatory bumps on my nose and cheeks. I was stunned, because I never had acne. "So, why was I developing acne now? “I finally decided to see a dermatologist. After brief inspection, he indicated that I had acne. The physician sent me home with a benzoyl peroxide facial wash and anti-acne medication. After several days on this treatment, I developed more facial redness, more red lines, and my face became sore, so I stopped treatment. I revisited the dermatologist and he told me to just use a topical steroid and gave me a prescription for a medium-potency steroid (with a year's worth of refills!). I questioned him about this because I knew the hazards of long-term steroid use, but he said not to worry about it. I went home and used the topical steroid sparingly - only using it for a couple of days at a time to reduce facial inflammation.
I was not satisfied with this treatment regimen, so I decided to get a second opinion from a different dermatologist. But, once again, the dermatologist prescribed topical anti-acne products and steroids. After much discussion with the second physician, I realized that these were the only treatment options that he offered (it was another dead end). So, I visited a third dermatologist . . . and then a fourth. Each physician had a different theory about the cause of my misery, including acne, yeast, bacteria, photo allergy reactions, etc., but with absolutely no mention of rosacea. After months of trial and error, I
Introduction
found my way to yet another physician. My fifth dermatologist prescribed a topical retinoid cream (tretinoin). I was told to "Fight through the irritation." I fought through the irritation for eight long weeks. I was a real trooper. But, my face now started to burn and physically hurt! So, I stopped applying the topical medication. I went back to the dermatologist and he told me to alternate using a topical steroid with the tretinoin cream. I thought to myself, "O.K., I've had enough.” So, I saw yet another dermatologist. This dermatologist prescribed 2% salicylic acid to clear my inflammatory papules. Within three weeks of treatment, the salicylic acid preparation cleared my papules beautifully. But, in the process, my face turned a uniform red. It was now extremely irritated and burned constantly. I went back to the prescribing physician and before I could tell her how I felt, she looked at my face and said, "You look great..... Your papules are gone". I then told her about my facial burning, irritation, and inflammation. She told me to, "Fight through this, because my face would adapt." So, on to my next dermatologist. "Someone had to know how to fix my face?”
The next several dermatologists offered no real help for my condition — they continued to recommend irritating treatments such as alpha- hydroxy acids, beta-hydroxy acids, mini-peels, chemical peels, anti-acne masks, laser skin resurfacing, dermabrasion, and topical steroids. Each time, they focused on my inflammatory lesions but, I always stressed to the physician that my real problem was the flushing, irritation, and inflammation. I told them that my face physically hurt. I explained that my face was ultra-sensitive and bummed for hours after application of all topical products. I also emphasized that I flushed to numerous triggers such as wind, cold, sun, heat, and warm rooms. Sadly, these general physicians never addressed any of my major concerns.
My appearance was starting to change right before my eyes. I had gone from a very confident, handsome-looking guy to a red-inflamed, papule face. It was very frustrating. Just about this time, I realized that for some strange reason, my eyes were now red and irritated; I did not know it at the time, but I was developing ocular rosacea.
Throughout this entire time period, the only treatment option that physicians offered me for the facial flushing, redness, and burning involved the long-term use of topical steroids. Almost every single doctor handed me a prescription for topical steroids, or mentioned that steroids were the only medication that would help relieve these symptoms. The steroid prescriptions usually had enough refills for a full year. I always questioned them about this, but they always shrugged it off (I rarely ever used the topical steroids because I knew what the long- term risks were).
I finally decided to do research on myself. It looked as though I would have to figure this out on my own. This meant that I would have to: (1) Read and decipher medical literature by skin experts in order to identify my disorder, and (2) Determine the most effective treatment regimen for my individual case. So, I did extensive research on myself during my spare hours. After several months of research, I came across a medical article by a dermatologist that described a disorder called rosacea. It detailed my exact symptoms! It also included a picture of a sunburned face that looked just like mine — in the same exact pattern. "That was it! I must have rosacea." But, three different dermatologists disagreed with my self-diagnosis. They informed me that I could not have rosacea because, "I was too young." These physicians stated that, "Rosacea did not affect people until they were in their late 40's or early 50's." All three indicated, "It was impossible to get rosacea in the 20’s." So, I took their word and continued my search.
Finally, after dozens of doctors and two long years of research, I chanced across a dermatology resident (medical doctor in training) who agreed with my self-diagnosis of rosacea. He directed me to a dermatologist who then officially diagnosed me with rosacea. The doctor immediately put me on oral and topical antibiotics. Within five weeks, I saw significant improvement in my inflammatory papules, and a slight decrease in facial redness. This knowledgeable physician boldly stated that both of these medications would cure my disease. “Wonderful! That is fantastic news… “Well, if that were the case, this would be a very short book.
My Rosacea
Severe Rosacea:
The Final Stage of My Flushing Disorder
After about six months on oral and topical antibiotics, my rosacea started to worsen again. My inflammatory papules were returning and my facial inflammation, flushing, and skin sensitivity increased significantly. The doctor was baffled, indicating that he had never seen a case like mine. He tried several oral antibiotics, but each one had minimal to no effect on my symptoms. My rosacea had progressed to the point where I had to completely avoid all of my obvious triggers such as sun, heat, wind, cold, skincare products, alcohol, many foods, hot beverages, and exercise. Even worse, I had several major triggers that I could not avoid; I was now extremely sensitive to warm rooms (above 70 to 72 degrees), mental activity, and I flushed spontaneously for no apparent reason.
As the disease advanced, my symptoms progressed. Most of my face was now permanently fire-red. It was 'sunburned' twenty-four hours a day/seven days a week. It looked as though I had fallen asleep in a tanning booth while wearing eye goggles. I now had a lumpy-bumpy, bright-red facial mask. It felt as bad as it looked. My nose was the worst part of my face. It was constantly fire-red and swollen. I also developed five permanent fibrous bumps on my nose that were growing into a mass (rhinophyma). I was very concerned about my nose because one of my relatives had a large, swollen, bulbous red nose (severe rhinophyma) that extended all the way down to his upper mouth. "YIKES! Is this what I had in store for me? "
For over two years in my middle 20’s, I had become a hermit. I went from being a very outgoing and social person to having very few friends and no life. My quality of life was poor and my future looked dismal. A brief outline of my facial and ocular symptoms at this stage was:
Vascular Component of Rosacea
• Intense facial flushing to heat, sun, wind, cold, emotions, physical exertion, and most foods.
Moderate to severe facial burning during flushing episodes. These burning sensations usually lingered for 30 to 90 minutes after the flushing dissipated.
Dense telangiectasia (tel-an-jek-tasia; structurally damaged blood vessels) over the entire center of my face.
Extremely sensitive skin. Facial redness was induced by most facial soaps, moisturizers and sunscreens.
Chronic facial swelling and inflammation.
Acne form Component of Rosacea
Several dozen papules on my nose, cheeks and
chin.
Sebaceous gland growth of my nose (rhinophyma).
Ocular Component of Rosacea
Chronic dry, gritty, irritated feeling to my eye surface.
Chronic watering of my eyes induced by wind, sun, cold, and facial flushing.
Rapid loss of my eyelashes.
Morning 'sandman' (sebum buildup from abnormal gland activity of my eyelids).
Numerous broken blood vessels on my eyelid margins, and whites of my eyes.
Swelling and inflammation of my eyelids.
I had severe rosacea for over two years and during this time period it progressed to the point where I was not functional. I was in my middle 20's and life as I knew it was basically over. As I mentioned previously, physicians could find nothing wrong with me. I was seen by over 60 doctors from four different states (Pennsylvania, Maryland, West Virginia, and Indiana). I was examined at the best
Introduction
medical universities in Philadelphia, Pittsburgh, Morgantown, and Indianapolis. I was also examined by numerous top-notch private clinics. They were all stumped and could offer me no hope for the future. They routinely prescribed the standard oral and topical antibiotics, but these only had minimal effects. They also tried beta-blockers and other oral medications, but, once again, with little positive results. Their best advice was to avoid all my triggers for flushing. So, I did this. Well, by avoiding all my triggers, my job and career were threatened, I lost most of my friends, and my relationship with the person I cared about most in my life had become severely strained. In addition, because I could not eat many foods without moderate facial flushing, I became extremely thin — I had gone from a fit 195 pounds (I am 6'0 inches tall), to a pitiful 142 pounds.
All of this finally took its toll on me. In my weakened state, coupled with a bleak outlook for the future, I almost gave up. It progressed to the point where I was bed-ridden for five days. I don't remember much from these days, but I was later told by a co-worker that he had become very worried about me; enough so, that he drove out to my apartment to check on me. He explained that he knocked on my door for quite some time - but did not get an answer. He then proceeded to jimmy the door open, got me out of bed, and took me to the hospital.
Upon arriving at the hospital, the physicians started intravenous fluids to give me strength. They then admitted me into the hospital for three days, placing me on complete bed rest. This was the lowest point in my life. I really felt as though I could just slip away. But, as I started to gain my strength, I told myself that / would search even harder for answers to my condition. "Someone must know how to treat this dreaded disease?" This was a new beginning for me. I still had a long road ahead of me, but I would get better. I would do whatever it took!
THE MEDICAL RESEARCH THAT HELPED ME TREAT MY ROSACEA
When I returned home from the hospital, I cut my workload down to alleviate some of my triggers. I spent almost every waking minute at home dedicated to the research of rosacea and flushing disorders. Although I had done quite a bit of research over the past several years, I now attacked rosacea with a vengeance. I treated it like I did my dissertation work. I began in-depth investigation into areas such as general dermatology, flushing syndromes, facial blood vessel physiology, facial skin physiology, the autonomic nervous system, the hormonal system, the immune system, irritant dermatitis, allergic
dermatitis, laser therapy etc. For the most part, I
did this seven days a week. Some of the research is listed below:
I held in-depth interviews with numerous physicians in rosacea-related fields (the number presented is a low estimate:
68 Dermatologists
12 Dermatopathologists
35 Vascular Specialists
26 Plastic Surgeons
12 Rheumatologists
13 Endocrinologists
5 Immunologists
27 Ophthalmologists
11 Allergy Specialists
6 Gastroenterologists
15 Neurologists
7 Psychologists
I held in-depth interviews with medical research scientists (Ph.Ds and M.D./Ph.D.s) who had specialties in the following areas:
Skin inflammation (immediate- and delayed- hypersensitivity reactions of the skin).
Vasculitis (blood vessel inflammation) and vasculopathy (impaired vessel growth and function).
My Rosacea
Neurovascular inflammation (nerve-mediated flushing).
Solar skin damage (sun-induced damage to facial skin and blood vessels).
Immunovascular pathology (immune system- mediated damage to blood vessels and skin).
Mast cell dysfunction (abnormal function of inflammatory skin cells).
Disease states associated with abnormal facial angiogenesis (growth of new microvessels).
Thermoregulation and autonomic nervous system dysfunction (our ability to regulate internal heat).
I read almost every English-written medical article on rosacea.
I read almost every English-written medical article on flushing syndromes.
I interviewed countless Naturopaths, Homeopaths, Herbalists, Alternative Medicine Practitioners, and Medical Estheticians.
THE CLEARANCE OF MY SYMPTOMS
Using a combination of Allopathic (modern) and Naturopathic Medicines, I have successfully stopped the progression of my rosacea. Furthermore, I have almost completely reversed the disease process - to such an extent that I consider myself near normal. With the treatment regimen:
Vascular Component of Rosacea
I do not have any facial redness -I have completely normal skin tone.
I do not have any telangiectasia.
My skin sensitivity has improved by approximately 70 - 75%.
I do not have any facial swelling.
My facial flushing and blushing have decreased by approximately 90%.
Acne form Component of Rosacea
I do not have any inflammatory papules.
I do not have any inflammatory pustules.
My sebaceous gland hypertrophy of the nose is
normalized.
Ocular Component of Rosacea
My eyes feel normal. They are not dry, gritty or
irritated.
My eyes act normal. They no longer water when I
am out in the wind, sun, or cold.
My eyelashes do not fall out anymore.
My morning "sandman" has been completely
normalized.
The broken blood vessels on my eyelid margins and
whites of my eyes have improved by about 80%.
Most days, my skin looks perfectly normal. No one would ever suspect that I had a severe form of rosacea. The treatments that I used to clear my rosacea are discussed throughout Chapter 10, "â– Rosacea Treatment by Therapy Type", and summarized at the end of Chapter 17, "Treatment Information on Rosacea ".
MY PERSONAL EXPERIENCE WITH
OTHER ROSACEA SUFFERERS
Over the past 7 years, I have been in contact with over 16,500 different rosacea sufferers (as estimated by my email account and postal mail records). Most of my communications have come through phone calls, postal mail, and email. Due to my busy schedule I have not been able to give all of these sufferers equal time — I had to separate them into three different groups: Group #/, which I communicated with on a weekly basis; Group #2, which I communicated with on a monthly basis; and Group #3, which I communicated with just once or twice in total.
Introduction
Rosacea Sufferers: Group #1
I've had in-depth communication with over 1,600 rosaceans concerning their individual cases. My first goal was to educate them on the causes of rosacea and facial flushing. My second goal was to help them find the proper physicians and treatment regimens. I routinely followed their progress with weekly in-depth communications. Most rosacea sufferers sent me detailed reports including their patient histories, triggers, and treatment regimens (treatments that made them better and worse). Many of these sufferers also forwarded personal photographs so that I could better evaluate their cases.
Rosacea Sufferers: Group #2
This group is comprised of over 4,500 rosacea sufferers. These rosacea sufferers were evaluated much like the first group, but were monitored less frequently (about once a month).
Rosacea Sufferers: Group #3
This group is comprised of over 10,400 rosacea sufferers. I have only had time to communicate with these sufferers once or twice (i.e., I received descriptions of their symptoms and triggers, and have responded to their pleas for help in order to get them on the right pathway). I wish that I could have spent more time with this group, but there just aren't enough hours in the day.
Important
Over the last several years, I have received phone calls and email from over 96 different medical physicians. These physicians wanted to know more about rosacea, and how to better treat their patients - rather than just mask their symptoms. These were very thorough physicians who cared enough to search for as much information as possible. These
physicians are special practitioners and I feel honored to have helped them (or at least to have tried).
I understand that physicians have the burden of treating dozens of different diseases. In doing so, they have to try to keep up-to-date on all of the latest medical findings, theories, and treatment regimens. This is an overwhelming task. Physicians often work extremely long days just diagnosing and treating patients. Add this to the ever-changing health care system that now makes it impossible for physicians to spend quality time with their patients, and you routinely get physicians who don't have time to properly interview rosacea sufferers, or read the most recent medical literature on rosacea. So, I am glad to be a source of information for these physicians. Rosacea is all I do! Why not drain me of all my information? My door is always open to physicians and rosacea sufferers.
QUOTES FROM ROSACEA SUFFERERS: EFFECT OF DISEASE ON QUALITY OF LIFE
Until I started in-depth communications with other rosacea sufferers, I felt like I was alone in the world - the only one whose quality of life had been adversely affected by facial flushing and rosacea. But, after thousands of reports from other sufferers, I realized three things: (I) There were many rosacea sufferers out there with identical symptoms, (2) Standard medical therapies were not very effective on moderate or severe rosacea sufferers, and (3) General physicians did not fully understand the effect of this disease on our lives.
I asked rosacea sufferers to send quotes regarding how rosacea altered the quality of their lives. Below are 40 selected quotes that were sent to me to publish in this book (I received 291 quotes in total). The basic goal of this section was to illustrate that standard therapy with avoidance of all flushing triggers was often ineffective in moderate to severe rosacea sufferers, and usually resulted in significant
My Rosacea
alterations in the sufferer's lifestyle, and a decrease in his or her quality of life.
1. Jen S. of Canada writes:
"For almost two years rosacea has controlled my life. I have many triggers for flushing such as bending over, sleeping, artificial lighting, and stress, but it is my facial response to mildly warm environments that is so severe that it has brought my active lifestyle to a standstill. Exposure to warm environments triggers intense flushing, swelling, burning, and pain. This reaction can last for days. My only relief is from a fan or air conditioning blowing cool air on my face. This makes every aspect of my life a struggle. It has gotten so bad that I can no longer go outside on warm days. Other activities that I used to take for granted that now set off this extreme reaction include going to malls, my children’s' school, friends' homes, and restaurants. Sleeping is also one long nightmare. I cannot lie down, must not let my face touch the pillow, and must stay in the same position all night, so that the flow of cool air from the fan falls directly on my face. Often the burning and pain awakens me. No part of my life is unaffected."
2. Lisa N. of Florida writes:
"Since being diagnosed with rosacea at the age of 16, I have followed a strict regimen of gentle cleansers, sunscreens, prescribed topicals, antibiotics, and avoidance of all possible tripwires. Despite these efforts, at age 30, I began to experience severe facial flushing, burning, swelling and an intense throbbing pain in my nose and cheeks. The daily pain continues to worsen and wakes me out of my sleep throughout the night. My triggers include warm environments (any environment above 66 degrees F), fluorescent lighting, sunlight, any heat source (ovens, vacuums, dryers, computer screens, etc.), tilting my head, bending over, and lying down. The simplest things like eating food, brushing my teeth, showering, talking on the phone, expressing emotion of any kind, reading next to a lamp, watching television, and sleeping have become very painful. I am no longer the energetic teacher and free-lance artist that I was before the pain started 20 months ago. Before then, I had not realized that rosacea could take over and
affect every aspect of a person's life. While broken capillaries, flushing, papules, and swelling are difficult to deal with, these problems are much less of a concern than the physical pain that overshadows everything else in my life."
3. Mike L. of Arizona writes:
"I was 19 when rosacea hit me. Every time I went outside in the sun or heat, my face would turn bright red and become swollen and burn. My face became sensitive to all topical products including medications, cleansers, moisturizers and sunscreens. It got so bad that I fell into a deep depression. I had to stay inside my cold dormitory room almost all day in order to control my facial flushing and rosacea. I ended up skipping most of my classes and eventually quit school due to my rosacea. I went to numerous endocrinologists, rheumatologists, internists, vascular specialists; two out of the three famous Mayo clinics, but no one could help me or give me any hope. I had no life at age 21. Before rosacea hit, I was the center of attention, very popular with the women, extremely outgoing, and in fact, played college basketball on a national championship team (University of Arizona Wildcats). Rosacea has dramatically altered every aspect of my life."
4. Steve B. of Nebraska states:
"I have suffered from severe facial flushing for twelve years now and it has turned my life into a horrible existence. When I start flushing, I have to stop whatever it is I am doing in order to prevent my face from getting worse. Most times I also need to find a cold environment with air conditioning in order to help slow down the flush. If I do not take these preventive measures, the flush stays with me for one to two days. My red face is then accompanied by numerous red bumps and burning. This rosacea has changed my life so much. I can't be the person I want to be - the outgoing, friendly person that I am. This disease has also affected my personal relationships because I can't just up and do something without making sure that it won't trigger facial flushing and burning. I have lost hope as the countless physicians and dermatologists cannot do anything for me."
Introduction
Joan M. of California writes:
"I have many triggers for facial flushing and rosacea progression. The quest to avoid these triggers has affected every aspect of my life. I must now avoid heat, direct sunlight, warm environments above 65 degrees, mild physical activity, and many types of foods and beverages because all of these are major triggers for facial flushing. I must also be very cautious with topical skincare products because many of these products induce major rosacea flares; I can't use most facial cleansers and I haven't been able to find a moisturizer that doesn't burn my skin or give me bumps. Often, it feels like I live my life on a tightrope with rosacea. If I stay on the rope by staying cool, avoiding irritating skincare products and eating the right foods, my skin looks normal. However, it is so tiring to stay balanced on this tightrope. It would be great if I could be like everyone else - go out for pizza, drink a glass of wine with dinner, or eat chocolate if I get depressed. But, if I get off the narrow rope and indulge, I'll pay for it the next day with a swollen face, red itchy skin, and numerous pustules and papules that will stay on my face for weeks at a time."
Wendy R. of Montana writes:
"I have the form of rosacea where my face flushes intensely and often. Some of my worst attacks occur when I go outside into the warm air or sunshine. Even if I wear sun block, my face gets very hot and uncomfortable within 5 minutes. If I stay outside for too long, my face burns unbearably for quite some time. It has gotten to the point where I don't go outside during the day anymore when the sun is shining, or when temperatures are above 70 degrees. I have lived like this for over 8 years. Rosacea has affected my marriage and my relationship with my daughter. This is the worst part of rosacea, the part where it affects relationships. If I try to act like there is nothing wrong with me and fight through the flushing, I just end up flaring for a week and am absolutely miserable. This is a miserable disease."
Patty C. of Oregon states:
"My rosacea flares are accompanied by numerous painful bumps and red-hot, swollen cheeks. During these flares, I am in constant pain and discomfort. I
had to cut my hair very short because my cheeks were so sensitive that hair touching them caused irritation. I nearly resorted to suicide because of the pain and discomfort. I have only been able to reduce my symptoms by severely restricting my lifestyle. My lifestyle changes include the following: I have a very limited diet, I hardly ever participate in outside activities, I chose to quit my job and work at home for less money so that I would have less stress. I constantly worry about getting a flare, and I never want to do anything anymore. In the beginning I was in constant pain and discomfort. Three years later, after all my lifestyle changes, I get pain and/or discomfort less often, but it's still at least three times a week. This is no way to live."
Jason L. of Ohio writes:
"I cannot imagine living the rest of my life with this disease. I am in my early 20's and it only seems to be getting worse, no matter what I do. I had to quit college because I cannot deal with warm classrooms, warm dormitory rooms or anywhere in which I cannot control my environment. It is sad, but I have already come to grips with the fact that I might have to lead a sheltered life in order to avoid my triggers and keep my rosacea from progressing too quickly. At first, I was concerned about my appearance; but lately, it has become painful to cleanse, or go outside in the cold, wind, heat or sun. My face becomes inflamed if I just move a washcloth gently across it. After most flushes, my face is soon filled with papules, pustules and broken blood vessels. This disease has altered my life including my career and potential relationships with women. Physicians are very caring and seem to want to help, but, in general have given up on my case."
Linda A. of Wisconsin writes:
"I have had to make serious life altering changes in order to keep my rosacea from becoming unbearable. I cannot go outdoors during the wintertime because it literally burns my face within 20 seconds. This burning stays with me for hours and sometimes the entire day and night. I have a double whammy because I cannot go out in the heat of the summer (anything over 75 degrees F) because I get the same red-hot, burning face. If I don't watch my triggers,
My Rosacea
my face becomes inflamed and hurts. During these periods I cannot wash my face with any cleanser, I can't smile, laugh, exercise, or do numerous other things that may bring up a facial flush or worsen an existing one. Rosacea is much more than just a cosmetic disease!"
Michael R. from New York states:
"Rosacea has altered my life quite severely. Before I was diagnosed and my condition worsened, I was very active in my business, community and family life. Now I retreat from most everything. As I continue to get worse, my self-confidence sinks even further. It has been more than life altering. It has altered my personality. It has been my experience that the 'lifestyle changes' so blithely advised in every rosacea treatment regimen will often include a general retreat from all active aspects of a productive life."
Mindy H. from New York states:
"I no longer feel like a normal human being. I can't take my son to the park, on vacation, or to any place where the sun might be shining or the temperature rises over 70 degrees. The sun and heat make my face hurt. I pretty much stay inside all summer. I don't have any papules or pustules, but my face has chronic redness. My eyes have been affected terribly with ocular rosacea, and are bloodshot and severely dry. They hurt and look so bad sometimes that I can't go to work. My nose is always red and swells right along with my eyelids. There is no method to its madness. Nowadays, my nose and eyelids are chronically swollen. Rosacea has dramatically changed my personality and lifestyle. I have gone from being a sociable person to anti-social. It has been very frustrating for my family and me. I have been to several doctors and have been tested for everything, but no one knows what is causing this terrible disorder. I am hoping that someday myself and others can live a normal life again."
Esther from the United States writes:
"I have severe rosacea. Rosacea has changed my life as much as having kids, getting married, or going through the death of my parents. Between the endless facial burning and the change in my appearance, I felt
as though I couldn't survive. It has gotten so bad that I now have to avoid all of my triggers. This has severely altered my lifestyle because I have numerous triggers. If I don't avoid my triggers I flare intensely. This is no way to live life. I have lost hope."
John S. of Illinois states:
"My rosacea is much more involved than just a cosmetic concern. I have searing hot pain with my facial flushing. This interferes with many aspects of my life. The central part of my face feels like it is on fire during the worse attacks, and this is bad enough to keep me from going to sleep. I have many triggers for severe flushing including temperatures greater than 68 degrees F, emotions of any kind, talking on the phone, lying down, any form of exercise, etc. Dozens of physicians have seen me, but nobody can help. I feel hopeless. This disease has ruined my life."
Darlene J. of Michigan writes:
"I just returned from vacation in Myrtle Beach. My husband insisted that we take our boys on a good vacation. I can't begin to tell you the emotional pain this vacation has caused me. I stayed in my hotel room the entire vacation. I watched from the window as my kids went down to the beach and played, made sandcastles, and swam in the ocean. I missed it all because I cannot tolerate the heat or sun. People who don't have this disease just don't understand what it does to you. Needless to say I have sent myself into a major flare over it. My emotions did me in and now I have to try to get a handle on this wild horse. The term "leper" (outcast) seems to apply to my life in many ways. This disease has totally disrupted my life.... The simple joy of not being self-conscious and going out in public without cover up would be such an incredible experience. The vacation from **** is over; however, the life with this mess is still here."
Mary Anne F. of Minneapolis states:
"Rosacea is hardest for me when my face is in a "burning flare" because any touch to my face — even a light, brief touch - raises red welts and intensifies the burning. I have a beautiful 3-year-old son who loves to snuggle, and who can't understand why his mommy, when in a rosacea flare, won't snuggle with him or let him touch or kiss her face. I tell him that I
Introduction
have an 'owie' on my face, but when he wants to kiss my face and make the 'owie' go away I can't let him do that. It breaks my heart to see my sweet child's uncomprehending disappointment when I push his small hands away from my face and refuse to let him sit on my lap and snuggle. I know that he won't be little forever, and that all too soon he won't be nearly so eager to snuggle with Mom. But when I am flaring even my child's wonderful snuggles mean aggravated facial pain. I can't tolerate our snuggles during those times, yet my heart breaks when I think about what it does to him emotionally when I push his hands away or put him off my lap. Second worst — during a flare I can't snuggle with my husband, either. Not much kissing and he must be freshly shaved to kiss me at all. I am lucky to have an understanding husband, but I know that he feels a twinge of rejection during these times. That, too, is heartbreaking. That's the worst thing — the way a burning flare affects my interaction with the two people that I love most in the world."
Laura P. of Massachusetts writes:
"Rosacea has dramatically altered my life. My face flushes and bums when I exercise, eat hot or spicy foods, get embarrassed, enter warm or hot rooms, am under stress, bend over, and play with my child or pets. It even flushes for no apparent reason. Every hour of every day I have to avoid triggers for flushing. If I do flush, my face becomes extremely red and swollen, and often times stays like this for several hours. This disorder has caused me to become very anti-social and has forced me to stay inside my house most days."
Shauna M. of Toronto states:
"This disease has been harder on me than anything else that I have ever experienced. This disease has not only altered my lifestyle, but it has adversely affected my husband and children's lives. We don't do much of anything anymore except try to keep 'mommy' in a cool, well-ventilated room away from the sunlight. If I get mad at the disease and say, 'to heck with it, I am just going to fight through it', I will pay for it with severe flushing and burning (with swelling of my nose and cheeks soon to follow). Strangers have asked me on several occasions if I felt alright because my face looked as though I had severe sunburn. This disease has frustrated my husband and kids because I cannot get close to them
because of their body heat. I love my husband and children with all my heart, but body heat from another person always causes intense flaring. I will then pay for that mistake for several hours or longer. I get bad sunburn every time I do something wrong."
Todd Z. of Alabama writes:
"I am only in my late teens, yet I have rosacea. Yes, rosacea has altered my lifestyle. My physicians just tell me to avoid anything that causes my face to flush or burn. To me, this means giving up all of my outdoor sports like soccer, baseball and basketball. It also means staying inside all summer long as the summers here are quite hot and muggy. I can't even go outside for a 10-minute stroll when the sun is shining. I am told by physicians to just put sunscreen on and go outside. Well, I think that I have tried every sunscreen known to mankind, but they all irritate my skin. In fact, the irritation usually gets so bad, that I might as well have gone out in the sun. Rosacea has also affected my dating life. I have not been out on a date in over 3 years due to my rosacea. How can I ask someone out on a date when I can't eat much of anything, can't go into warm rooms, can't be close to a person because of their body heat, or do anything that requires mild physical exertion? I dread the future because no matter how many things I avoid, it continues to worsen. I want to go to college but I have too many triggers. I often feel like a prisoner inside my own body."
Anthony P. of Detroit remarks:
"I don't have a life anymore because of rosacea. I am continually avoiding situations, foods and environments. I now have social phobia due to my disease. I was not always like this. I used to like being around other people and going places. But it is very hard when you have to control everything you do, eat, and the temperature of the environment that you are in. It's impossible for me. So, I have given up and now avoid all things that make my rosacea worse. People always tell me that I should wear sunscreen or stay out of the wind because it looks like I have sunburn. The funny thing is that I have not let the sun hit my face for over 5 years. I can't because I cannot tolerate any type of sunscreen. One has to have this disease to appreciate how devastating it can be."
My Rosacea
Martha G. of Texas writes:
"I have too many triggers to list here, so I will just tell you about the one that affects me the most. I get severe bouts of flushing twice a day for no apparent reason. One in the early afternoon and one at nighttime. These flushes stay with me for several hours. The doctors cannot find anything wrong with me, yet I experience severe flushing every day. It can happen when I am in a cool environment, enjoying myself, or when I am taking a nap. It just hits me and makes me stop whatever I am doing. Like I said, this is the hardest on me because I have no control over it. It has severely altered my life, enough to force me to quit my public job and work at home. Although I don't like being red, it is the accompanying flushing, inflammation, and burning that really distresses me."
Timothy S. of Kansas remarks:
"Have you ever fallen asleep on the beach for several hours without sunscreen on? How about skiing in sub-freezing temperatures all day? You can imagine the facial redness, burning and inflammation. Well, this is what I have. But it does not go away, not at all. I have had this burning, flushing and inflammation every day for over 13 years now. Rosacea has taken a toll on my marriage. My wife and I are now separated because of rosacea. She could not handle all the lifestyle changes that I had to make in order to keep my rosacea from getting worse. This disease has taken away most of the things that I enjoy and has cost me my marriage."
Jeannie P. of the UK writes:
"Rosacea has altered every aspect of my life. It has affected me both physically and emotionally. My face is always burnt-looking and inflamed. On top of this, I have numerous acne-like lesions that stay on my face for several weeks. I not only look horrible, but my face burns on and off throughout the day. It has gotten so bad that I cannot put anything on my face. I can't even put makeup on, so I cannot hide my face from the world. I have given up all outdoor activities, all forms of exercise, and many types of foods and drinks. Even though I adhere to this strict regimen of avoidance, my face continues to worsen. I have recently been diagnosed with rhinophyma - my nose is swollen, large and extremely red. In order for me to slow down this disease, I have to avoid all of
my triggers. Rosacea plays a role in everything I plan or do."
Scott F. of California remarks:
"In order for me to keep my rosacea in check I have given up all of my outdoor activities including sports, camping, sailing, swimming, taking walks, and biking. I also had to quit my job because it forced me to be outside for extended periods of time. Many things make my face flush such as heat, warm rooms, sun and wind. All of these wreak havoc on my face. The sun is a major problem for me; if it hits my face for more than 3 minutes I turn bright red and burn for hours. It has gotten so bad that I don't go outside anymore, except at night after the sun has gone down and the air has cooled. Rosacea has also affected my dating and friendships because I can't do most things that 'normal' people do. When I do get up the courage to try something such as going outside on a warm day, or meeting a friend at a restaurant, I become beet red. This red face is very obvious and often makes others uncomfortable. My friends sometimes look at me and ask me what is wrong. I usually reply, "I just don't know". The last year and a half I have learned to be happy by myself, staying inside the protection of my air-conditioned house. This disease has affected my face, lifestyle and personality."
George S. of Pennsylvania states:
"I have had rosacea for approximately 28 years. Over the last three years, my rosacea has gotten quite severe. It has progressed to the point where it interferes with my job as a schoolteacher. My face is chronically inflamed and flushes on an hourly basis. My face is so red that students routinely ask me if I am sick. On top of this, my nose is now affected with rhinophyma. Rosacea finally took its toll on me last year when my face started to burn unbearably; I decided to quit my job and work from home. I miss teaching and interacting with students, but caring for my rosacea has to come first."
Susan A. of Ohio writes:
"I have severe rosacea which consists of intense facial flushing. If I flush for too long, my face stings and burns. I have literally dozens of causes for these flushing episodes including embarrassment, crying, happiness, smiling, skincare products, most foods,
Introduction
warm environments, sun, heat, walking up steps, bending over, fluorescent lighting, etc. This awful disease also affects my family. We can't do anything outside anymore. From inside my house, I usually watch my husband and kids play, longing to be out there with them. I can't go out to eat with my family either because of all of my triggers. I also can't hug or cuddle with my children for very long because it makes me flush terribly. This breaks my heart. Furthermore, I can't be intimate with my husband without severe facial flushing and burning sensations. Yes, rosacea has altered my life. In fact, it has altered the lives of everyone in my family."
Fran W. of Connecticut writes:
"I used to love sunny days and now I dread them because sun is a major trigger for me. Sunscreen only irritates my skin, so hats have become my saving grace — nothing less than a 4" brim. Each day, I go out with my hat and glasses on because I cannot risk a single ray of sun hitting my unprotected face. However, compared to winter, summer is my better season, since I can at least protect myself from the sun with my hats. Winter is much worse for me because there is no protection from the cold or wind. This means I don't go out much. The worst part of this affliction is having to live this sheltered life. I want my skin back. I used to have thick beautiful protective skin. Now, I feel as though my skin is worthless. It does not protect me at all from the elements. This is a depressing and frustrating affliction. The only thing that keeps me positive are the wonderful, caring people that love me, e.g., my husband, family and friends. They have been very supportive. My skin is under control at the moment, but my life is sheltered and inhibited. I want to run free again."
Igor G. of Novosibirsk states:
"I live in Russia. Winters here are extremely cold, and unfortunately harsh winter air is my worst trigger. If I go outside, within a few moments my face starts tingling and is burning bright red for the rest of the day. During these cold windy days, I have to stay inside and skip my university classes."
Susan L. from the United States writes:
"The greatest disappointment in having this disease is that I cannot enjoy the summer with my son. He is
now an active 8-year old and all he knows is that mommy cannot go to the beach, throw the ball, go for a bike ride, walk outdoors, and can't volunteer to chaperone a field trip because of the sun and what it does to her face. Also, we do not eat at McDonald's as a family because of all the trigger foods that I have to avoid. I understand that people are dying with diseases and currently I can't die from rosacea but sometimes I get so overwhelmed with all of my "lifestyle" alterations. Most of my friends do not understand what I have to go through each and every day. They often question why I can't go out to eat with them or go outside during the day, etc. I usually just reply that I have no choice in the matter. I have to avoid my triggers."
Nanette B. of New York states:
"I experience severe facial flushing if I spend more than two hours outside on a hot summer day. Even if I apply sunscreen and wear a baseball hat, my face will turn bright red. I usually experience painful burning sensations with this flush that last for several hours. I am very concerned about the future of my career because I am a filmmaker who must often work outside. This has deeply affected my life."
Becky C. of Rhode Island writes:
"Living with rosacea is most difficult for me during the summer because the heat causes my face to become extremely flushed. Performing any kind of outdoor activity exacerbates the situation even more. Despite years of living with this condition, I still feel humiliated when people stare at me, or when I overhear comments like, "Look how red that woman is!" Complete strangers have even approached me to see if I'm feeling alright, fearing that I'm about to pass out."
Randy C of Michigan states:
"My face hurts all the time. It has gotten so bad that I cannot put any skincare products on my face. If I wash my face in the morning, it turns bright red and burns until lunchtime. If I try to wash it at night, the inflammation and burning interfere with my sleeping. I have tried every dermatologist-recommended cleanser but they all cause my skin to become red, irritated and dry. I also cannot wear sunscreen. This means that I cannot go outside in the sun. Winter is just as depressing because my sensitive face cannot
My Rosacea
handle the wind or cold weather. I have become a hermit and I am only 23. Rosacea has altered every aspect of my life."
Bob K. of San Diego writes:
"I used to love life. I was very active outside and had many close friends. I now have severe rosacea with chronic redness, burning and intense flushing. Sun and heat (even slightly warm rooms) are strong triggers for my rosacea. I have lost most of my friends because I cannot do much without worsening my rosacea. I am told by physicians to 'avoid all my triggers'. Well, in my case, this means avoiding life. The past four years I have literally been forced to stay inside the safety of my air-conditioned house. I feel like my life is already over at 26 years of age."
Sally P. of California writes:
"Rosacea has ruined my life for over 11 years. During this time I have tried to work through my rosacea, but it just gets worse. I have finally given up and succumbed to this life-altering disease. I now avoid all of my triggers. When physicians blurt out those three dreaded words, 'avoid all triggers', they don't understand what that means to a rosacea sufferer. In my case, it means not going outside in the sun or in warm temperatures above 75 degrees. It means not baking or cooking in the oven. It means not washing or cleansing my face with anything other than cold water. It means not getting emotional, either happiness or sadness. It means not exercising or eating hot or spicy foods. It means not making love to my husband. It means avoiding friendships, as they will inevitably ask you to go outside of your perfectly controlled environment. I know that this is not a life- threatening disease, but the final trigger avoidance for me was my decision not to have a child. I want one desperately, but I can't even function by myself in my stress-free, climate-controlled house. Rosacea has altered every aspect of my life."
Jim W. of Canada states:
"I was first diagnosed with rosacea in my late teens. It has steadily gotten worse, even with medical treatment. It started out as a small patch of redness on my left cheek. Two years later, it has engulfed my entire face — nose, cheeks, chin and forehead. Now, my face physically throbs and bums. It has progressed to the point where it looks as though I
have severe sunburn. It looks so bad that close friends have actually asked me if my face hurts. I am very depressed because none of my physicians can help me. I had acne when I was young, but rosacea is much more devastating because almost everything I do makes it worse. I really miss my old life."
Joan B. of Texas writes:
"I don't really mind the sunburned look or the inflammatory papules on my face. It is the physical pain that rosacea causes that really upsets me. My face has gotten so bad that it is quite painful to smile or laugh. I also have to cut up my food very finely or use a small spoon because opening up my mouth too wide causes my face to flush and burn. This is very frustrating. I do get some relief, but it is only when I do everything perfectly. This is really tiring. Every day is a challenge for me. I used to be extremely carefree, enjoying the outdoors, travelling, exercising and biking. Those days have disappeared. I feel hopeless."
Sam T. of Ontario writes:
"How has rosacea affected my life? Well, it has affected all aspects of my life. My face cannot stand sun, heat, cold or wind. Within minutes of any of these triggers, my face will flare, resulting in an immediate 'sunburn' appearance that can last for 30 minutes to 8 hours. During these flares, my face feels red-hot and burns, just like sunburn. As my rosacea has gotten worse, warm rooms, malls, restaurants, gyms, and cars have started to cause flares. This has caused me to withdraw from life. I now have to keep my house temperature below 66 degrees F. and keep fans blowing in my bedroom. The worst thing about this disease is that it has recently affected my sleep. Most nights I cannot go to sleep until my burning subsides and when I do fall asleep, I sometimes wake up because of my 'sunburn'. This is a horrible disorder."
Jill P. of New Jersey writes:
"My rosacea skin has become so sensitive and reactive that I cannot wash with anything but water, and cannot use a moisturizer, sunscreen or make up. My three other triggers for flushing are sun, heat and warm environments (I have had to give up all outdoor activities, because if I don't, my face gets much worse). My face seems to have a mind of its own -
Introduction
reminding me every time when I have been 'bad'. But, being 'bad', sometimes means just being in a warm room that is comfortable to everybody else. This is the single most frustrating part of rosacea. Warm rooms. If there is no air conditioning and the room is above 70 degrees, I will turn beet-red, like a tomato. It has gotten so bad that I now have to bring ice with me in order to go into warm rooms. Needless to say, I do not go out much anymore. So, yes, this disease has caused me much anguish, depression and pain. It has altered my life and has caused me to be a recluse."
Andrew R. of the UK writes:
"I first noticed rosacea at 15 years old. My rosacea began as a long-lasting flush after exercise. It progressed slowly to blushing, then onto flushing due to extremes of heat. I noticed permanent red patches on my cheeks. Then my skin became dry. Nothing I used would clean my skin without irritating it. After a shower it would be incredibly painful, dry, tight and even more prone to flushing. Recently, even eating has become a trigger - I can only eat cold salads and sandwiches. Anything hot is a no-go area. Now, even mild stress causes a major flush which is incredibly painful."
Paul M. of Kansas states:
"Rosacea has altered my life greatly. It causes me physical pain in the form of chronic burning, and psychological pain due to my severely red face with inflammatory lesions on it. It is most distressing that it is getting worse. I have given up all social functions, exercising, and most of my friendships in order to slow down this disease. Every day is a major challenge because of my numerous triggers. It is really quite exhausting to be me! Doctors are at a loss as to how to treat my red, burning face. This disease is the worst thing that has
ever happened to me.
Samantha R. of Maine writes:
"Rosacea has adversely affected my life, career, and relationship with my husband. I have lived in Florida my whole life, but over the last 10 years the heat has really started to bother my rosacea. It progressed to the point where it became physically painful to be out in the sun. In fact, anything over 70 to 74 degrees F.
caused my face to turn beet-red and burn. My rosacea became so severe that my husband and I decided that I would be better off up North in a cooler climate. So, we quit our jobs and moved away from all our friends. Here is the sad part - the first winter in Maine I realized that cold winter weather caused just as much facial flushing and burning as Florida heat. I am now extremely depressed and feel suicidal. If I stay inside my house 24 hours a day, I can decrease the facial flushing and burning. But this is not a life. It has taken a big toll on my relationship with my husband and we have decided to separate. Rosacea has definitely altered my life."
All of the above sufferers have been seen by physicians and have been treated with the standard rosacea therapies (topical and oral antibiotics). As one can see, standard rosacea therapy with avoidance of all rosacea triggers is not a very satisfying treatment regimen for those with moderate to severe rosacea.
MY EXPERIENCE WITH PAST HEALTH AILMENT: COMPARISON TO ROSACEA
After reading through my experience in "Twenty- Four Hours in the Life of a Rosacea Sufferer" and other rosacea sufferers' experiences in, "Quotes from Rosacea Sufferers: Effect of Disease on Quality of Life", the reader should begin to realize that this vascular disorder can cause debilitation from both physical discomfort and lifestyle alterations. However, because you (the reader) do not know my personality or the personalities of the other sufferers, you cannot tell if our reaction to this affliction is appropriate or not. Are we being over-reactive to a cosmetic disease? Is the facial flushing that debilitating? Is the facial burning really that intense, or do we just have a low threshold for pain? Are we whiners? Are we weak-spirited? Do we give up easily? These are all very fair questions. For this reason, I think that it is important for the reader to understand how I normally react to pain, injury, or other health problems. Otherwise, how does the reader know what I define as troublesome, painful, or life altering?
My Rosacea
Below are detailed two major injuries that I received ~ one during high school (torn ligaments of my right ankle), and one during college (torn rotator cuffs of both shoulders):
The First Injury: Torn Ankle Ligaments
The first injury occurred during my senior year in high school while playing basketball on the varsity squad. During a basketball game in the beginning of the season I went up for a rebound and was inadvertently sandwiched between the other team's center and big forward. When I came down to the floor, I was caught at an awkward angle with all of the weight of the two large basketball players, in addition to my own weight, centered on the side of my right ankle. The sheer weight of all three of us drove the side of my ankle straight into the ground, bending my foot all the way to the inside of my lower leg (my ankle was not made to bend that way) I immediately heard a pop and felt a rip in my ankle. This was followed by a searing pain that rose up my foot à through my ankle à and into my lower leg. The pain was so quick and intense that I remember getting goose bumps and feeling nauseated. I was immediately taken to the hospital emergency room for x-rays and medical evaluation. The emergency room doctor told me that I had done major damage to my ankle ligaments and bone, and that I would need to be in a cast for at least two months. He stated that my basketball season was definitely over. But, I wanted to make sure, so I asked to be evaluated by a second doctor. Before the second physician could examine me or look over my x-rays, I explained to him how much I wanted to play basketball, "This was my senior year!" After his medical evaluation, he told me that I could play it by ear - I would have to wear an air cast around my ankle, walk with crutches, and take it easy for several weeks before I could begin to test it out. He told me that I might be able to come back for the last couple of games of the season. He prescribed an oral painkiller and potent anti-inflammatory, and sent me home. That night, my ankle swelled to over twice its normal size and throbbed intensely.
For the next several days I could not put my shoes on due to the degree of swelling. In addition, I could not put any weight on it without intense pain. But, I
wanted to play basketball, so after only five days, I started to practice on it. Every single day was an extreme challenge, both in putting up with the constant pain, and trying to play basketball on an ankle that I could barely walk on.
A typical day for me started out very early. I woke up at 5 a.m. in order to slowly stretch out my ankle. I would then get a ride to the high school where the team trainer would work on my ankle in a whirlpool for about 45 minutes. He then taped me up, put my air cast on, and gave me my crutches (I could only put enough weight on my foot to keep my ankle loose). During class, I had to elevate my leg on an adjacent chair in order to decrease the swelling and throbbing sensation. I refused to take my prescription painkiller because I was worried that by masking the pain, I could potentially hide serious damage that I might be doing to my ankle.
Before practice or games I would get in the whirlpool again get stretched out by the team trainer à get taped up à put my crutches down à and play basketball. It hurt, but I loved basketball! After the practice or game was over, I immediately iced my ankle à re-taped the ankle to keep the swelling down à put my air cast on à took my anti-inflammatory medication got my crutches à and hobbled home. I did this ritual throughout the whole season and did not miss one practice or game after the initial injury period.
After the final game of the season I traveled to a nationally recognized Sports Rehabilitation Center to have my ankle evaluated because it had progressed to the point where I could not put any weight on it due to the pain. The physicians were surprised that I had played on it all season long because I had torn many of my ankle ligaments. I also had several floating bone chips in my ankle. I immediately underwent reconstructive surgery to repair the damage. During the surgery, the physician removed a good ligament from my lower leg, drilled a hole through my entire anklebone, and placed the good ligament through the hole in order to reconstruct the ankle. They also removed all of my bone chips. I was then placed in a cast for 15 weeks in order to heal. The surgery was a success, but my job was not done yet because after getting out of the cast, I was put on an extensive 6-
Introduction
month rehabilitation program which included daily whirlpool treatment, ice and warm soak therapy, and stretching and strengthening exercises.
The Second Injury: Torn Rotator Cuffs
The second injury occurred in college while I was weight training in preparation for baseball (I was a pitcher on the college baseball team). I was doing behind the neck presses with a large amount of weight and lost control. The person who was helping me (the spotter) could not handle the barbell with weight. The weight fell directly behind my head and all the way down to the floor — while I was still holding it! In essence, the weight yanked my arms all the way behind me, while they were fully extended. This resulted in extensive damage to both of my shoulders. I immediately went to the hospital. Upon examination, they found several major tears in both of my shoulder muscles and irreversible damage to my bursa (fluid filled sacs in my shoulders responsible for protecting the bones from rubbing against each other). The worst result of the accident, as they found out later during surgery, was that there had been extensive damage to my shoulder muscle (rotator cuffs); approximately 50% of my left shoulder rotator cuff, and 60% of the right shoulder rotator cuff were now dead scar tissue.
I would need surgery on both shoulders, but the surgeon could only operate on one shoulder at a time because I would need the other shoulder to be somewhat functional while the other one was recovering. The surgeon operated on my left shoulder first; he removed all of the scar tissue, sutured the muscle tears, removed the bursa, and cut an inch of bone off of my shoulder (clavicle) so that I could get my range of motion back. The surgery was a success, but I had to wear a sling for 4 months. After this time period, my left arm came out of the sling and I started an exhaustive 2-month rehabilitation program that consisted of stretching exercises, ice and heat therapy, and weight lifting. After my left arm was rehabilitated, the surgeon operated on the right shoulder and I then repeated the sling immobilization and rehabilitation. In total, this one accident affected nearly one year of my life. But, I was back to normal after all of the hard work.
The above injuries had a significant impact on my life - both the injuries themselves and the rehabilitation that was required to get my body back to normal. Throughout both of these injuries, I did not feel sorry for myself, nor did I consider myself a 'victim'. Things happen in life and you deal with them the best that you can.
Physical Injuries vs. Rosacea
As the reader can see from the above excerpt, I am a fighter and have sound coping strategies. I also consider myself to have a high threshold for pain - as demonstrated by playing through three-quarters of a basketball season on a painful, damaged ankle. I always try to 'roll with the punches' and place a positive spin on difficult situations. However, when I compare those two major injuries to my rosacea, there is no comparison. Rosacea is, by far, the worst thing that I have ever experienced. If I had the choice to go through both of those injuries again in order to rid myself of rosacea, I would in a heartbeat.
Rosacea beat me into submission. I could not work through rosacea or rehabilitate it. I could not work harder or wake up earlier to improve it. I could not mentally challenge it, and I certainly could not ignore it. I could not put a positive spin on any aspect of this disease. The intense facial flushing was life altering, and the facial burning was truly painful - enough to force me to use painkillers for almost 9 months. Everything I did just seemed to make it worse. After years of fighting against it, the rosacea beast had won. Several times during the severe stages of rosacea I thought to myself that if I could, I would give up five years of my life in order to be normal again. That is how much rosacea affected me. Looking back, I had almost given up five years of my life. I had given up almost everything I enjoyed doing (i.e., baseball, basketball, golf, swimming, sun, beaches, all outdoor activities, eating at restaurants, going to parties, exercising, and numerous activities with my wife). I could not go outside in the heat, sun, cold or wind. In fact, I could not stay in rooms that were over 70 to 72 degrees Fahrenheit. I had also given up most of my friends (well, they had lost interest in me because I could not do anything with them). I had given up all of these
My Rosacea
things, stayed on the standard treatment regimens, and still my rosacea continued to worsen. The general physicians did not know how to treat me and had given up. Rosacea and the lifestyle alterations that come with it can be quite severe. Rosacea can cause debilitation.
MY PROFESSIONAL BACKGROUND
I am a biomedical research scientist at the Department of Physiology & Biophysics, Indiana University School of Medicine, Indianapolis, USA. I have a Ph.D. in Microvascular Physiology. I am a vascular expert - I understand how blood vessels in the human body act and react during normal and diseased conditions. My medical training is in human physiology and pathophysiology, and my laboratory training is in medical pharmacology. I am currently funded by the American Heart Association (AHA), and the National Institutes of Health (NIH) to study microvascular function under normal conditions and in diseased states such as diabetes. For more detail, please see the following curriculum vitae:
MY CURRICULUM VITAE (Selected sections,)
Education
1987-1991:
Pre-Medicine: B.S. in Biology, Cone, in Chemistry
Moravian College, Bethlehem, PA
1992-1997:
Ph.D. in Microvascular Physiology
West Virginia University School of Medicine, Dept.
of Physiology, Morgantown, WV
Biomedical Research Experience
1987-1992:
Clinical Laboratory Technician
Grandview Hospital, Clinical Laboratories, PA
1990-1992:
Research Assistant
Dr. Stacey Zaremba, Moravian College, PA
1992-1997:
Ph.D. Candidate
West Virginia University School of Medicine, Dept. of Physiology, Morgantown, WV
Research Interests:
Local & neural control of blood flow
Sympathetic nerves and microvascular tone
1997-present:
Biomedical Research Scientist
Indiana University School of Medicine, Dept. of
Physiology & Biophysics, Indianapolis
Research Interests:
Microvascular alterations in Type II Diabetes
Microelectrode Measurements - Nitric Oxide
Research Grants and Support
1998-2000:
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