Topics Discussed Below

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• Introduction
  
• Quotes from rosacea sufferers
  
• Take home message

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I.  Introduction

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: (1) 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 me quotes regarding how rosacea had altered the quality of their lives. Below are 40 selected quotes that were sent to me to publish in my book (I received 272 quotes in total). The basic goal of this section is to illustrate that standard therapy with avoidance of all flushing triggers is often ineffective in moderate to severe rosacea sufferers, and usually results in significant alterations in the sufferer's lifestyle, and a decrease in his or her quality of life.

II.  Quotes from Rosacea Sufferers

1. Jen S. of Alberta writes:
"For almost two years rosacea has controlled my life. I have many triggers for flushing such as bending, 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. There is intense flushing, swelling, burning, and pain. These can last for days. My only relief is from a fan or air conditioning blowing cool air on my face constantly, day and night. This makes every aspect of daily life a struggle. Even on slightly warm days I can no longer go outside, whether or not the sun is shining. Other activities that I used to take for granted that now set off this extreme reaction include going to malls, my childrens' 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 laying 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 my flushing and burning. I have lost hope as the countless physicians and dermatologists cannot do anything for me."

5. Joan M. of California writes:
"The quest to avoid a flare from rosacea has touched every aspect of my life. For instance, walking for longer than 20 minutes usually causes a facial flare. Outside temperatures higher than 65 degrees, or sunlight striking my face are also major triggers for my rosacea. I also flare to many foods and drinks. To make matters worse, my face is easily irritated by skincare products. 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. 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."

6. 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 sunblock, 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."

7. 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."

8. 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."

9. 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 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!"

10. 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."

11. 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."

12. 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."

13. 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, laying 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."

14. 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."

15. 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 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."

16. Laura P. of Massachusetts writes:
"Rosacea has dramatically altered my life. My face flushes and burns 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."

17. 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 a bad sunburn every time I do something wrong."

18. 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 shinning. 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."

19. 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."

20. 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."

21. 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."

22. 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."

23. 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."

24. 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."

25. 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, 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."

26. 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."

27. 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."

28. 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."

29. 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."

30. 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."

31. 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 handle the wind or cold weather. I have become a hermit and I am only 23. Rosacea has altered every aspect of my life."

32. 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."

33. 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, both 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."

34. 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, both cheeks, chin and forehead. Now, my face physically throbs and burns. 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."

35. 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, traveling, exercising and biking. Those days have disappeared. I feel hopeless."

36. 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 a 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."

37. 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 - reminding me everytime 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."

38. 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."

39. 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. Everyday 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."

40. 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 had gotten 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."

 

III.  Take Home Message

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.

 

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