I've written a petition that I would like to post at petitiononline.com. I'm posting it here in case anyone wants to provide me with any feedback before I post it. I've used some quotations from this board. If I've quoted you and you don't want to be quoted, let me know.

Here's the petition:

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 people’s 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. 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 don’t 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 Crow’s 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 don’t 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 world’s population is affected by KP, the profits from more effective treatments would be enormous. KP sufferers already shell out enormous sums for treatments that don’t 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.

Great timing! I finally had some free time on my hands and thought I'd look up some stuff for the petition and my first stop was the forums...where I found a petition already written! It's very well written and conveys some important points. Wonderful job and a personal thank you from a fellow KP sufferer.

I'm not sure if adding the treatments that people have tried would be helpful at this point in the petition. Perhaps a simple list...Typical treatments include AmLactin, LacHydrin, Callous lotion (Soul Owner), Sulphur Soap, Urea, Salicylic Acid, glycolic acid...maybe even mention tanning. Perhaps that would help others understand (and therefore support us) how much we all really have tried. Similar to how acne suffers frequently site Accutance, BP, Sal Acid, as treatments.

My thoughts...what do you all think? Thanks again

Great Petition. I want to thank you for taking the time to write this. It is very articulate and really says all the agony that we endure as KP sufferers. I hope that you will submit this to the website. Thanks again for your tremendous effort.

Jenny

Well done! Go for it!

Hello my 13 yr old daughter and I have been visiting this site for the past year and realized today that we had not joined. So this is our first post today. We have tried EVERYTHING for her KP and then SOME, ABSOLUTELY NOTHING WORKS!!! We have 2.5 yrs of creams, lotions, soaps, supplements, prescribed meds - Her bath vanity and shelves are running over with "endless hope." Today we located a KP Petition on line. Please visit this site Keratosis Pilaris Research - Signatures
TODAY and sign your name to this petition on KP requesting the start of much needed research!!! Please forward this website to anyone you know with KP!. Thank you!

Do you know of any other KP or skin care websites that I could list this petition on?

Great petition! Good job. The only problem is there are worse skin conditions than KP, and it's not life-threatening, so I doubt anyone is interested in researching further into this. (unless of course they realize they can make a lot of money with it)

I don't think pharmaceutical companies would really be interested in an online petition anyway.

I don't think anyone takes online petitions seriously. I don't know what the answer is.

I agree with your petition. There should be researchers finding a cure for Keratosis Pilaris, because I also have it and it is one of the largest imperfections of my body. You should put your petition into action. Thanks for speaking for us unfortunate victims.

natalie.kayy

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thanks!
-natalie.kayy

Wonderfully worded, great job. Dermatologists and every other doctor I've been to has tried "simple reassurance".

They always try to act like I'm not the only one with it and its not a big deal. Every time I go out in public 99% of the people I see have flawless skin, maybe some acne but everyone gets acne and most people grow out of it. I wonder how these doctors would feel if their kid had KP and couldn't do **** about it. Anyways, I digress; great job, please sign this, everyone. I'm not sure how much attention this is actually going to receive, but its one of the few things we can do, I guess...

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Sign this Petition that demands better research on KP! *I did not create this Petition, but I sure as hell support it. Add this to your Siggy if you like, please*

i have to say my daughters dermatologist is excellent but i agree with the petition.
their is a doctor reserching it in newcastle thats how after 40 years i finally found out the name but good luck i will sign

I totally agree with your petition and if you consider it aproppiate i would like to translate it to spanish so i can send it also to other companies.??
Great job.

oh bull**** they cured acne and thats not life threatening neither is atheletes foot. this may not be life threatening but it sure has made many people depressed and down on there life. actually kp can be a slow death to some. oh they can do sex changes which is not life threatening but nothing for kp , thats a bunch of bs. nothing will get done unless u try so go for it what do u got to lose.

Couldn't agree more! I checked out the petition link, under 4000 signatures - not a very good effort - especially if it is true that up to 50% of population have kp to some degree - needs more publicity. There are megabucks out there to be made by someone who can come up with a reliable & relatively easy cure (I say that because, when you've been trying to keep it under control for decades you get a bit fed up with the many rituals involved, so easy would be great)!

Re: Ive Hit A Possible Breakthrough with Parasites as cause
Parasites: My 14 yr old daughter has had KP for the past 3 yrs, been getting gradually worse, month by month, spreading from the tops of her shoulder to her wrist, tops of her thighs to ankles - the past couple of months. We said enough is enough, exfoilating only keeps her skin in a state of inflammation. She looked like she was in a cat fiight, etc. Been to 3 Derms, Internists, Endocrinologist, Allergist, Spa facials to include arms, tried every cream, lotion, gel, scrub, peel, Dermadoctor, supplements, Peason's Promise, antibiotics, birth control pills -thinking her hormones were imbalanced causing KP & acne, no milk diet, Bioskin, Arbonne, Clinique, many many name brand OTC creams, etc. A friend called last week 8 May 08 and informed me of her "parasite theory" she had learned from another friend with KP. A doctor s****ed a specimen from one of the girls bumps and sent off and tested for Parasites, came back positive. The potential parasite theory is worth a try and makes sense to us, due to the fact the hair follicles are blocked with excess Keratin and every human body occupies parasites. My friends friend used for 6-8 mos (and now my daughter is using for 5 days) soap and shampoo to treat Demodex Parasites externally, HD Soap - Demodicidin Soap, Dr Chang Sheng X Shampoo @ www.pacificspiritcatalogs.com 503.357.1566 and to treat Parasites internally my daughter is drinking Dr Miller's Holy Tea @ www.holyteaclub.com/gaylebraun Our friend also noticed cystic acne cleared from the external and internal cleanses listed above. My 14 yr old has been doing this treatment for almost 5 days and can see improvement on her legs where she had the least amount of inflammation. Remember if you are wearing long sleeves or jackets to cover these bumps every day, wash the jacket every day to kill off potential parasites nesting on the fabric. When using the soap leave on the skin 10-20 minutes to dry, then wash off. Remember to clean the bath tub after bathing. The tea is natural, infants consume this tea. Once skin clears you will only need to do a "maintenance" with this soap, shampoo, and tea. We are also changing sheets more often during this initial process. Hope this gives hope to at least one KP sufferer. Will update our progress - so far positive results. Blessings to you!