I did ask in health but posting in here for traffic...
My niece is currently very sick with the complications of this rare autoimmune disorder and I'm desperate to find someone with any knowledge about it, especially anyone who has to live with it.
I can't find a lot out there online and whilst her doctors are trying really hard, they're not sure how to treat her right now... she's only five and suffering through so much.
So does anyone know anyone, or suggest any forums/support groups where we can find some experience of dealing with this condition?
Thank you!