It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Autoimmune Disorders Message Board

Looking for Name of Disease

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 05-31-2011, 11:27 AM   #1
Senior Veteran
Join Date: Aug 2005
Location: Wisconsin
Posts: 706
missy101 HB User
Question Looking for Name of Disease

We had a rummage sale this past weekend. A 5 year old and his family came to the sale. We spoke with them for a few minutes about a rare illness the boy has been struggling with and I would like to find out more to try to help.

At 17 months he had open heart surgery and proudly showed to me his scar. He now has arthritis and has to be on a liquid diet because solid foods will not digest.

They said this illness is so rare that I believe only 2 people in Wisconsin have it. And I want to say 400 worldwide.

I have been scouring the internet and cannot find anything sounding like what he described. I do know it was a very long name and the anagram was something like NIMBY or MINBY or something LIKE that...but those showed no results. I do know he is being treated by a rheumotolgist and that it is an autoimmune issue.

If anyone has any thoughts or info I would so appreciate it. He told me the name and mentioned the boy has a webpage...but I stupidly didnt write it down. And I think I will be able to find the page if I know the name of the illness.

Thanks guys

Sponsors Lightbulb
Closed Thread

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:21 AM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!