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-   -   37 yr. old with KTWS and now a mystery autoimmune disease/disorder (http://birthmark.org/board/showthread.php?t=6569)

Sarawthanh 11-16-2013 01:43 PM

37 yr. old with KTWS and now a mystery autoimmune disease/disorder
 
Has anyone here or their loved ones ever had panniculitis along with their kts? my boyfriend who is 37 has ktws effecting his left leg and brain and for about a year now, starting last october, has gotten very painful (even with pain management) flareups of panniculitis on his arms and thighs (his thighs flared up so bad and so painful last month he could barely walk, he has also developed edema in his right thigh and Drs even did exploratory surgery on it and cannot find the cause for the edema and it is presenting abnormally as the skin is very hard on top and is the edema is collapsing in on itself and he is getting a patch of panniculitis on top of that ) that result in secondary infections that form abscesses with granulomas that have to be drained. The first time it happened it progressed within days from the panniculitis to the abscess, that is how quickly it happens,and it happens multiple times in a month, almost weekly, he also gets fevers. He has seen the top infectious disease Dr. in North Carolina where he lives and that Dr. could not find the cause. Nor could Drs at Duke, really none of them have ever seen anything like it. The cultures taken show things like strep and staph. They think that he's got some kind of autoimmune disorder/disease that is causing this. It is still being explored, he is on prophylactic antibiotics that seem to lessen the amount of abscesses however they are still occurring and the plan now is for him to go to NIH. I'm just wondering if any of you or anyone you know has had or is having anything like this or has any guidance like Drs who might be able to help. Thank you.

missy 11-20-2013 01:39 PM

Hi,

Have you found any answers for your boyfriend yet? I'm sure no one has responded to this because this is a very unusual presentation.

I'd love to hear what you find out!

Missy

Sarawthanh 11-21-2013 08:37 PM

No answers yet, the Drs are just working on managing the symptoms at this point which unfortunately might be all they can ever do if the autoimmune disease/disorder is never identified,but I think the odd edema might be lymphedema,he's gonna talk to his general surgeon about it. As I said the plan is to go to NIH and just trying to get in there is a tedious process and he might not even get in for six months. Thank you for responding

missy 11-22-2013 12:58 AM

I hope things go well for him. Let us know and also let us know if we can do anything for you.

Missy

Sarawthanh 12-05-2013 06:42 AM

Thank you,are there any groups for this site on facebook?

missy 12-06-2013 01:31 PM

http://birthmark.org/node/246 will direct you to our facebook pages.

How is your boyfriend doing?

Missy


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