What we need to do...

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Originally posted by Nicole

I just visited the website for Southwestern Medical School in Dallas, Texas and found the dermatology department. I looked for the head of Research in Dermatology and sent him an email to please read our posting..and to look at this website. I think if we got our message across to the research labs in this country...maybe one would take an iniative..atleast it is a try..i also think there could be big $ in finding a treatment...

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Originally posted by MichaelL

I visited the Southwestern Medical School's webpage too. I noticed that the dermatology department's website has links to the National Rosacea Society and other similar organizations that raise money to fund research for different skin disorders. Maybe we need to form a similar society to raise money for KP research.

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Originally posted by Macie

That's highly unlikely. People on this board need to chill out-seriously. Be lucky that you have both arms, even if they are covered in red dots.

Jesus.

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Originally posted by Sara

Macie-
I dismissed your comment the first time you said it figuring you were just passing through but I'm not going to continue to read your shaming posts- especially if you're going to swear! I agree with Miss and Michael that KP can be very debilitating. We might be physically "healthy" but the psychological impacts can be huge! What do you expect us to talk about on this web board? How great it is to have KP? That is what is unlikely!

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Originally posted by miss

Macie - Why is this highly unlikely? I'm sure everone that has visited this web page has done so for good reason. It's not selfish or superficial. What makes this condition so bad is that a lot of people have never heard of it & when they see it on someone they think it's pimples or just plain weird! So, for those of us who have KP we would like to see some improvements in terms of research & treatment. Why have you visited this web-site if you think it's no big deal?? I'm very grateful for everything I have but if I can make a difference - I will try! How do you think cures are found - the people afflicted want, need & make it happen. This is a condition I will likely pass on to my children & I hope that time comes KP will be one less thing they have to worry about. So please stop trying to make us feel guilty!

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Originally posted by miss

Macie - Why is this highly unlikely? I'm sure everone that has visited this web page has done so for good reason. It's not selfish or superficial. What makes this condition so bad is that a lot of people have never heard of it & when they see it on someone they think it's pimples or just plain weird! So, for those of us who have KP we would like to see some improvements in terms of research & treatment. Why have you visited this web-site if you think it's no big deal?? I'm very grateful for everything I have but if I can make a difference - I will try! How do you think cures are found - the people afflicted want, need & make it happen. This is a condition I will likely pass on to my children & I hope that time comes KP will be one less thing they have to worry about. So please stop trying to make us feel guilty!

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Originally posted by MichaelL

I notice that you keep saying this. I AM thankful to have both arms, but I must say it's not just my arms that are covered in these red dots -- it's pretty much all of me. This is a very distressing disorder for those of us who have severe cases. Rosacea isn't life threatening either, but I doubt you'd tell people suffering from it to just be thankful they have a face, even if it's covered in red dots. Well, some of us have KP on our faces, and it's no fun. If people can organize to find a cure for rosacea, why can't we organize to find a cure for KP?

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Originally posted by MichaelL

Good for you, Nicole! This is exactly what we need to be doing -- contacting people who do dermatological research. Do you know of any other places we could contact?

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Originally posted by Push for treatments...

I agree with you to a certain extent. People on this board who talk about not being able to even live with this are going a little overboard. This is not a life or death situation. However, there is nothing wrong with pushing to find a treatment for this. Although it's purely cosmetic, so is acne, rosacea, port wine stains - they have treatments for those and research. What is wrong with doing the same for KP? It can be very disfiguring for some people.

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Originally posted by Kristen

To Macie: As far as saying we should be lucky we have both arms and to just deal with the fact we have little red bumps. IT IS DEEPER THAN THAT! Most of us with KP have More than little red bumps on our arms. It covers our bodies and we are treated and feel just as if we didnt' have armes. Constantly having people staring at ur arms and legs or even face, saying what is all over u, is completely devastating to us. So until u have walked in some of our shoes, do not tell any of us how to deal! We are trying to deal. This website is for us and we can complain all we want. It is our condition we have to live with and help each other with.

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Originally posted by Kristen

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Originally posted by Me

I agree with Sara!!

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Originally posted by ME

I think That you are completely right about what you said in your post.

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Originally posted by d

This is my first visit here. I know how it feels to have people stare and say insulting things. How would this Macie person feel if a stranger in an elevator pointed at her and said, "Oh, my God, what is all that?" while pointing at her arms? How would she like to have to explain to people that it's a skin condition and then have them look at her in disgust? Would it be okay to point at someone without an arm and ask them how they can present themselves in public? How would she feel when people don't say that you look nice but feel free to point at you and say embarassing things? She needs to wake up.

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Originally posted by Nicole

you're funny..i agree with you, but if it bothers so many people..then what is the harm in doing something about it..