Keratosis Pilaris Research
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American Academy of Dermatology; Charterhouse Therapeutics; Connetics; Enhance Biotech, Inc.; SoleRx, LLC; Molecular SkinCare Limited; Neutrogena; Medicis Pharmaceutical Corporation; Miravant Medical Technologies; Serono; bio.com; Barrier Therapeutics; AG
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We, the undersigned, request that professionals in the field of dermatological research make a better effort to understand and treat a disfiguring skin disease called keratosis pilaris (KP).
Keratosis pilaris usually takes the form of red bumps on the back of peoples upper arms or on the front of their thighs, but in a significant number of cases, the entire body is involved. Many of us have red bumps covering our arms and forearms, our legs (including our lower legs), our backs, our stomachs, our chests, our buttocks in short, everywhere but our hands and feet. There is even a form of keratosis pilaris called keratosis pilaris rubra faceii that affects the face.
Our experience with dermatologists is disappointing. Most of them just try to convince us that the disease is no big deal. They give us ineffective (and very expensive) creams and lotions that have little to no effect. (Typical treatments include AmLactin, LacHydrin, Sulphur Soap, Urea, Salicylic Acid, glycolic acid.) In his online article on KP, Mark A. Crow expressed the attitude of most dermatologists: Treatment in most cases requires simple reassurance and general skin care recommendations.
Unfortunately, those of us who suffer from KP are not easily reassured. We understand that the disease is not life-threatening, but many of us feel that it is life-ruining. KP wreaks havoc with our self-esteem and can lead to depression and intense psychological distress especially for those of us who have widespread cases.
The following comments are from the website keratosispilaris.org, a forum on which KP sufferers share information about their experiences with the disease. These comments show just how emotionally devastating KP can be:
"I am so very upset more than ever. I need something that works that will get rid of these unsightly bumps and get rid of the redness...I get so depressed since I have not many friends and I need confidence badly and this just brings me down. I even cry all the time over it. . . . I dont want to go through another winter being depressed and shady all the time..."
"It is once again approaching summer and the KP is coming back as the target of my depression. I have never met anyone with as bad a case as mine. It would be nice to hear from someone that can relate to some of this. I am 37, and am fairly successful economically and educationally, but not emotionally. I have a degree, a career, a wonderful family, even a farm with lots of critters, but none of it can keep me away from the constant depression because of what I look like, and what measures I have gone through to hide it. I have not worn short sleeves or shorts publicly in over 10 years. I look like a dope junky or someone who survived a porcupine attack!!"
"I turned 32 last month and I've had a severe case of KP my whole life. It pretty much covers my entire arms, legs and butt area. . . . . I haven't worn shorts in a long time either, probably around 17 years or so. I actually don't even own a pair because what is the point? Also, the last time I went swimming I was 17 years old. I wear pants all summer long in extremely hot, humid weather and it just kills me. The comments and questions never stop, and of course I never tell anyone the real reason why I am always covered up. Even my closest friend that I've had for the last 10 years who was my roommate for a year and a half has no idea. I've just led her to believe that I cover up because I'm uncomfortable with my body, which I guess is the truth in a way, but just not in the way she probably assumed. And yes, it is VERY depressing, especially during the summer months when all the "normal" people are out wearing shorts and tank tops having fun in the sun. This f'ing thing has haunted me my whole life and I've pretty much let it take over every area relationships (ha!), socializing, my self esteem you name it and I've got a problem with it."
The causes of KP are poorly understood. As Mark Crows article says, Etiology is unknown, although it may be due to a disorder of corneocyte adhesion that prevents normal desquamation in the area around the follicle. We would like to see more research into the etiology of KP. If this skin disorder were better understood, more effective treatments might be possible.
Recent technological advances make such research feasible. The human genome has been mapped, and sophisticated computer models are available that could analyze any data that researchers could gather about KP. We believe that it is possible to better understand KP but that dermatological researchers have little interest in this illness because they dont believe it to be a serious problem.
For those of us who suffer from it, it is a serious problem. Of course, it is not as serious as problems that are life-threatening, but it is at least as serious as other primarily cosmetic skin disorders. There is even research being done now on how to undo the effects of aging on the skin. Last year, an article in the Dermatological Times reported that genomics researchers had discovered a photomodulation treatment [that] alters the activity of a number of genes involved in signaling pathways for UV-induced inflammatory responses and skin aging . . . . If it is possible to alter the activity of genes involved in aging the skin, then surely it is also possible to alter the activity of any genes involved in the overproduction of keratin in KP sufferers. And if it is worthwhile to undo the effects of aging, it is also worthwhile to relieve the suffering of people with KP.
Researchers should also consider the possible financial rewards of discovering more effective treatments for KP. Since, by many estimates, half the worlds population is affected by KP, the profits from more effective treatments would be enormous. KP sufferers already shell out enormous sums for treatments that dont work. Most of us stop using the treatments after a while because they are so expensive and so ineffective. But we would be willing to continually spend a great deal of money on any treatment that really worked. We urge you to make an effort to find one.
Thank you for your attention to our petition.
Keratosis pilaris usually takes the form of red bumps on the back of peoples upper arms or on the front of their thighs, but in a significant number of cases, the entire body is involved. Many of us have red bumps covering our arms and forearms, our legs (including our lower legs), our backs, our stomachs, our chests, our buttocks in short, everywhere but our hands and feet. There is even a form of keratosis pilaris called keratosis pilaris rubra faceii that affects the face.
Our experience with dermatologists is disappointing. Most of them just try to convince us that the disease is no big deal. They give us ineffective (and very expensive) creams and lotions that have little to no effect. (Typical treatments include AmLactin, LacHydrin, Sulphur Soap, Urea, Salicylic Acid, glycolic acid.) In his online article on KP, Mark A. Crow expressed the attitude of most dermatologists: Treatment in most cases requires simple reassurance and general skin care recommendations.
Unfortunately, those of us who suffer from KP are not easily reassured. We understand that the disease is not life-threatening, but many of us feel that it is life-ruining. KP wreaks havoc with our self-esteem and can lead to depression and intense psychological distress especially for those of us who have widespread cases.
The following comments are from the website keratosispilaris.org, a forum on which KP sufferers share information about their experiences with the disease. These comments show just how emotionally devastating KP can be:
"I am so very upset more than ever. I need something that works that will get rid of these unsightly bumps and get rid of the redness...I get so depressed since I have not many friends and I need confidence badly and this just brings me down. I even cry all the time over it. . . . I dont want to go through another winter being depressed and shady all the time..."
"It is once again approaching summer and the KP is coming back as the target of my depression. I have never met anyone with as bad a case as mine. It would be nice to hear from someone that can relate to some of this. I am 37, and am fairly successful economically and educationally, but not emotionally. I have a degree, a career, a wonderful family, even a farm with lots of critters, but none of it can keep me away from the constant depression because of what I look like, and what measures I have gone through to hide it. I have not worn short sleeves or shorts publicly in over 10 years. I look like a dope junky or someone who survived a porcupine attack!!"
"I turned 32 last month and I've had a severe case of KP my whole life. It pretty much covers my entire arms, legs and butt area. . . . . I haven't worn shorts in a long time either, probably around 17 years or so. I actually don't even own a pair because what is the point? Also, the last time I went swimming I was 17 years old. I wear pants all summer long in extremely hot, humid weather and it just kills me. The comments and questions never stop, and of course I never tell anyone the real reason why I am always covered up. Even my closest friend that I've had for the last 10 years who was my roommate for a year and a half has no idea. I've just led her to believe that I cover up because I'm uncomfortable with my body, which I guess is the truth in a way, but just not in the way she probably assumed. And yes, it is VERY depressing, especially during the summer months when all the "normal" people are out wearing shorts and tank tops having fun in the sun. This f'ing thing has haunted me my whole life and I've pretty much let it take over every area relationships (ha!), socializing, my self esteem you name it and I've got a problem with it."
The causes of KP are poorly understood. As Mark Crows article says, Etiology is unknown, although it may be due to a disorder of corneocyte adhesion that prevents normal desquamation in the area around the follicle. We would like to see more research into the etiology of KP. If this skin disorder were better understood, more effective treatments might be possible.
Recent technological advances make such research feasible. The human genome has been mapped, and sophisticated computer models are available that could analyze any data that researchers could gather about KP. We believe that it is possible to better understand KP but that dermatological researchers have little interest in this illness because they dont believe it to be a serious problem.
For those of us who suffer from it, it is a serious problem. Of course, it is not as serious as problems that are life-threatening, but it is at least as serious as other primarily cosmetic skin disorders. There is even research being done now on how to undo the effects of aging on the skin. Last year, an article in the Dermatological Times reported that genomics researchers had discovered a photomodulation treatment [that] alters the activity of a number of genes involved in signaling pathways for UV-induced inflammatory responses and skin aging . . . . If it is possible to alter the activity of genes involved in aging the skin, then surely it is also possible to alter the activity of any genes involved in the overproduction of keratin in KP sufferers. And if it is worthwhile to undo the effects of aging, it is also worthwhile to relieve the suffering of people with KP.
Researchers should also consider the possible financial rewards of discovering more effective treatments for KP. Since, by many estimates, half the worlds population is affected by KP, the profits from more effective treatments would be enormous. KP sufferers already shell out enormous sums for treatments that dont work. Most of us stop using the treatments after a while because they are so expensive and so ineffective. But we would be willing to continually spend a great deal of money on any treatment that really worked. We urge you to make an effort to find one.
Thank you for your attention to our petition.
7092 Signatures
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Thaise A
- Comments
- Não aguento mais ouvir que ceratose pilar não tem cura. Não deve ser tão complicado assim investir em pesquisas deste tipo. Outro agravante é a falta de informação da maioria dos dermatologistas que mais parecem estar desatualizados a respeito de informações específicas sobre o tratamento da ceratose.
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kim d
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- I have KP for almost all of my life, and I have see many dermatologists. I have a severe case of KP which spread all over my body as a result I feel very depressed. There are a ton of research for acne why there is little research for KP which affects 40 % of populations. please do a research on Keratosis pilaris
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- Comments
- Please do some more research into KP! I've lived with it my whole life, for 24 years now, and its only getting worse. The bumps were originally just mild and on the back of my arms and on my legs, but now they are on my butt and stomach as well and they have gotten redder and more widespread. Kids at school used to think that I had goosebumps or pimples all the time on my legs and it was embarassing. My fiance tries to make me feel better about the bumps and tells me that I look beautiful anyway, but I can't help but feel self-conscious about the fact that I'll be spending my honeymoon wearing a bathing suit and covered in red bumps. Please help me and others like me who suffer with KP!
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ryan a
- Comments
- Kprf ruined my life, thats all I need to say.
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Cammy
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Rania A
- Comments
- KP is psychologically devastating, please help us live normal lives.
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Mairah
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Madeline M
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talar
- Comments
- "I have placed a petition up requesting that dermatological researchers make a better effort to understand the causes of KP. Now that the human genome has been mapped and there are sophisticated computer models available to analyze any information dermatologists could collect about KP, there is more hope than ever, but researchers don't seem to be particularly interested in KP. Let them know that we want better treatments.
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Linda O' H
- Comments
- I so agree with you.
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DeLayne P
- Comments
- I've had these bumps on my arms since I was very young and am hoping there will be a cure! :)
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nicole
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Benjamin T
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JK
- Comments
- I have had KP on my arms since i can remember and it has never been soo bad but i have always been insecure about my arms beacuse of it. I have tried all sorts of creams to using nothing at all to get rid of it. However a few days ago my arms became VERY itchy and i couldnt resist and now my KP is quite servere. It's come to a point where i have been having images of getting a knife and slicing the top layers of my skin off. Some may read this and think i have mental issues but no, i am quite sane - i have a fantastic job and life and thankful for what i have been given in life. Only people with KP will understand what i am going through and how i feel. Its not as much as the appearance now its more to do with the irritation - warm weather or cold, KP is never happy! Doctors and researchers really need to do something or i may have to resort to the images in my brain and im sure there are thousands of other people out there who feel the same!
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Emma C
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Vivien T
- Comments
- If there is cure for "harmless" nuisances like pimples, white/blackheads, then there should be one for Keratosis pilaris too! This covers 90% of my entire arms and truly destroys my self esteem! The worst part about this is no one knows this condition. I finally found that there is actually a name for this condition, and so I told my parents...to which they laughed at. To this day, they still don't believe me. Everybody thinks I got a rash/allergies so they don't want to get close to me. I couldn't explain it to them either..:( Honestly, if its such a common situation, people should really spread the word and educate others. I grew up my whole life not knowing what these infesting ugly bumps were.
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Sergio T
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George B
- Comments
- Please research this condition.
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Leanne M
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India B
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michael m
- Comments
- No idea why research is not done considering half the worlds population has it. You would think they could see a big market for sales of a proper product or treatment to get rid of kp. Many thanks Mike
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Eden J
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Cecilia Chavez del S
- Comments
- Encuentren una cura por favor, gracias.
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Lucélia Sá P
- Comments
- we want more research on the treatment of keratosis pilaris
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Ana V
- Comments
- This disease is life ruining. The thought of haivng to wear a sleeveless shirt or shorts causes me an equal panic and distress of being naked in public. Technically I am. My disease that covers over 80% of my body is on display for everyone to see most of the time unless I wear long sleeve and pants year round. Wearing clothes over it is the only was to hide it. I have tried most if not all over the counter creams and lotions most have no effect at all if not very mildly. THe worst thing for me is in a situation when I have to wear something that revals my arms or legs in a social gathering and it never fails that someone always asks, "What is that on your arms?" With a look of curiosity and disgust on their face. Sever KP can look very irritated and red and discolored. I have had people even ask me if I have skin cancer. I really just HATE my skin and am sick and tired of wasting money in products that don't work. It is about time that research goes into this disease to find a cure if not a therapy that can help us deal with this.
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Julius F
- Comments
- I really hope this petition passes. As a teenager going through this problem, I have often fallen into the pit of insecurity. Every time I look into the mirror, I see those birth-mark like dark blotches of KP on my arms. I sometimes imagine the horror and discomfort it would bring my boyfriend when he crosses his arms with me, or just when he is stroking my arm. Please, for my sake and for the rest of the people suffering from KP, I sincerely hope that this petition is approved by dermatologists.
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Paola R
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Madee S
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Margie M
- Comments
- I'm still in my teen years, but I'm getting really frustrated with constantly hearing "How'd you get that rash?", everyday at school. I've had KP all my life and honestly, my self-confidence is extremely low due to this. I'm ashamed to show off my arms in short-sleeved shirts. I just want these bumps gone for good!
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alex P
- Comments
- DO SOMETHING ABOUT THIS!
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Johan L
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Monica S
- Comments
- Please help us.. :-(
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Megan C
- Comments
- Please help us find a cure for this.
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Alma N
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Nancy W
- Comments
- please!!!!!
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Delphine G
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Bella
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Yusra A
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Martin
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Kate
- Comments
- Please help us to get rid of this terrible disease! It is not just a disease, it is a stigma that keeps us away from social and normal life. Not wearing short clothing in the summer....not going swimming....people asking why you never show your legs....problems to get intimate with the one you love...not even dare to date because of your ugyl skin....it causes so much depression...last summer i spend most time inside...in the dark....could not stand the sunlight which shows how terribly my skin looks like. was not able to see the happy NORMAL people how they show their skin...how NORMAL it is to them...it hurts so much. keratosis pilaris really effects my life badly. it keeps me away from social life and having fun. so please help.
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Brenda C
- Comments
- Please find a cure!!!
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Sarah J
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Gary
- Comments
- Help
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Tenzin J
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marta del rocio r
- Comments
- apoyo el que sigan la investigacion por que es molesto vivir con esta enfermedad gracias
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Jennifer M
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Cady D
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Morgan W
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Carla S
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Amanda
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7092
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