Siobhan's Illness

Aimeewaimee · 03-08-2009

Okay so my friend Siobhan has this illness... it doesn't have a name, so I will just call it Siobhan's Illness for now.

Basically, her fingers are bent at the tips which makes it very uncomfortable for her to write (which is why she, like myself, now has a laptop for school), and she's generally in a lot of pain.

She went to a specialist hospital in London, and the doctors said they had never seen anything like it. So in short, she's the only person in the world to have this condition. She gets to be in a medical textbook and everything.

I was just wondering if any of you guys knew of anywhere she could go to talk about her condition, even though nobody else has it?

It would be much appreciated

ReineDeLaSeine14 · 03-08-2009

I also have a nameless genetic disorder that either will be a new type of EDS or something all on its own.

I recommend Johns Hopkins and Yale...both are hospitals I have worked with and who have been VERY helpful.

Don't be afraid to invite Siobhan here if she'd like to become a member!

Aimeewaimee · 03-09-2009

Thank you

I'll speak to Siobhan about joining here, because if there are other people with nameless genetic disorders then I'm sure she'd be interested.

xxBrittany · 04-20-2009

Awh. Wow, that sounds VERY overwhelming.
Good that laptops are invented for people like us!

PLEASE do talk to Siobahn (hope I spelled that right) about joining here. I'd love to talk to them, and maybe all of us could help and be a greater support for them.