>>>>Let's start our own research!<<<<

[Archive]

Originally posted by sashaandjenny@hotmail.com

Dear KP-people,

I am 24 and my life has been a nightmare for the last eight years thanks to we all know what. I diagnozed myself four hours ago as I finally decided to search for &quot;goosebumps&quot; on the internet in some crazy hope to cure my skin. I read most of the posts on this board and EUREKA it seems to me I know what we can do to help ourselves other than crying on each other's shoulder.

LET'S START OUR OWN RESEARCH!

Obviously there is not much help available and no professionals interested enough to do any kind of study. We can't go on like this waiting for some magic bottle of X to appear and cure us all. In any research collecting and analizing data is 90 per cent of the deal. I suggest we put together a questionnaire that EACH of us fills out, and every one of those who join later will do the same. By doing this we might be able to find a kind of pattern which is characteristic of KP. We could find a FACTOR which is responsible for this and concentrate on removing/dealing with that factor. It may be as well that our skin is the last place we should be treating, it might be something within our bodies, like poor circulation, excessive weight, blue eyes or something also. Knoweledge is power, and we as a group lack that. If we collect too much information for us to deal with, we can forward it all to the dermatologists out there who are invloved with funding/researches. That way we'll give them data which might trigger some ideas.

WHAT WE SHOULD DO

1.Put together a list of questions. I can think of age, sex, race, place of birth, country of residence, climat, hight/weight, when the symptoms started, were the parents affected, the location and severity of KP, the treatments attempted, diet, supplements, level of physical activity, smoking/alcohol, other conditions, etc. We can all think of that and come up with a perfect questionnaire.

2.Set up a form on the internet which would allow to complete the questionnaire on-line. We could use any of the &quot;internet poll forms&quot; available for free, some of them even provide graphics for easier interpretation, or, if this site's web-mistress doesn't mind, we could do it here. I should warn against using the forms that are sent by e-mail though, as it would require somebody to work with them full time. I run my own web-site which is quite popular and I had problems with mail forms.

3.Choose a few KP sufferers' representatives who would contact the respected dermatologist with the collected data.

So, what are we waiting for??? Just think of all the money those doctors at the universities spend on research, and here goes a perfect opportunity for them to have half the job done for free.

AND THE MOST IMPORTANT REASON why I want to do that...hopefully one day it will help my poor skin! LOL!

I really feel for all of us. Since KP is not even widely recognized as something that causes constant emotional trauma and make people suffer, there is no way those money-sucking pharmaceutic companies are going to invest into finding a treatment. We should prove to them that there are many of us, we are ready to pay for the cure and we are smart enough to help them.

[Archive]

Originally posted by JC

Great idea! Done correctly, this will be very helpful. Here we go... It is a known fact that people with
a suppressed immune function are prone to “acquired” atopism (atopism holds hands with chronic kp).Therefore, to start your survey I suggest some questions that will hopefully prove this point: 1-Stress levels, Social Fobia
or other psycho-immune suppressors? 2-From blood tests: IgE, WBC, Platelet count? 3-Viruses: Mononucleosis, Hepatitis, etc.? 4-Accutane course? 5-Medicines? 6-Allergies? 7-Cheilitis (dry lips)? 8-Difficulty healing skin wounds? 9-Dry eyes?

[Archive]

Originally posted by JS

Great idea! Thanks! I agree because they info out there can be soooo wrong! I've read that this goes away on it's own, that it stops at 30, etc. . . it is not that cut and dry and that is why they can't find a cure., . . .they don't know all the facts. We need everyone on the board to participate and we may get somewhere!!!!!! Thanks for posting this!

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Originally posted by katy

I would ask how many people who have KP pick their skin..you will probably find MOST if not ALL do..picking causes kp to worsen and spread.....

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Originally posted by miss

Something needs to be done in terms of treatment options for KP. I've tried finding research &amp; clinical studies to no avail. I'm not sure that doing research outside of a controlled scientific study would do much good in terms of being considered reliable by Dr's or scientists but it could demonstrate the NEED for better treatment options (some that actually work)!! I'm not sure what research you've done on your own but I'll share with you some info I've come up with from several hours searching the internet:
- Intense Pulsed Light therapy is used to treat the redness associated with KP
- Laser hair removal may help KP since the hair follicle is involved with the condition (Dr. Lupo website)
- Microdermabrasion helps with bumps. Several sessions are necessary (costs about $750)
- KP has gone away in (cancer) patients who were treated with Chemotherapy. This is obviously NOT a treatment option for anyone just thought the info might be helpful.