skin disorders
- KarenL_12
- texmom
- Etain
- texmom
- Etain
- Etain
- Bethann47
- texmom
- j_redpath
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» Etain - Atrophoderma of Pasini and Perini
Hi folks,I'm looking for others that have this disease or have information on treatments
Atrophoderma of Pasini and Perini
http://tray.dermatology.uiowa.edu/Atroph...
My daughter has it and it's a very rare disorder...fairly harmless..but still I'm wondering if there's more for treatments aside from steriods and retin A. An article would be great. HOwever I do know the information is quite hard to find.
Leona
Irish Genealogy Editor
-- posted by Etain
» texmom - Re: Atrophoderma of Pasini and Perini
In response to message posted by Etain:Hi Leona! Thank you for your topic request. I am not familiar with this disorder, but I will definitely see what I can find. I have article topics planned through early Spring, but if I discover something before then I will be sure and post it.
Shannon
-- posted by texmom
» Etain - texmom
Thanks,It's so rare that it boggles my imagination. You can barely find anything on it. Seems like there must be more on it though.
What it does is it attacks the collagin in the skin in patches. What a drag..*L*..luckily it's almost always confined to the upper chest and the back.
I'll keep watching.
Leona
-- posted by Etain
» Etain - I want to thank the editor!!
In response to message posted by Etain:I want to thank you!! It was nothing you did but being here and having my post up here.
I was contacted by someone who suffers from the same skin problem as my daughter. It is such a rare disease and my heart almost exploded when i found the mail today.
My kelly has someone now with years of experience in dealing with this disorder. I'll get her in touch with the woman after a bit of discussion between the two of us.
Oh god..you just don't know how much this means to me. Thanks to you our editor, Shannon, and suite101..for doing something so flipping amazing!!!!!!!!!!!!! You can just have no idea..none!
Leona
-- posted by Etain
» Bethann47 - Re: Atrophoderma of Pasini and Perini
In response to message posted by Etain:My 16 year old daughter was told she has Atrophoderma of Pasini and Perini today. This was the 3rd Dr. she saw for this condition. We were told there is nothing she could do - or is there?
-- posted by Bethann47
» texmom - Re: Re: Re: Atrophoderma of Pasini and Perini
I am so glad you wrote. Although this is a "rare" condition, there seems to be a lot of people suffering from this disease. I have intended to research this topic for some time, and will be posting an article August 1st. Of course, I am not a doctor, but I hope it can be of some help and hope. In response to message posted by texmom:-- posted by texmom
» j_redpath - Re: I want to thank the editor!!
In response to message posted by Etain:I have this rare skin problem. Its 1 in every 100,000,000 persons. I know some things about it since I got its around 7 years old and am now 39. It okay when you are young but there are problems when you get older and things you need to do. Contact me on what you know and lets share our knowledge.
-- posted by j_redpath
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