Keratosis Pilaris Research
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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.