I want to talk with any Rare Disease Caregiver
Hi I am new to CAN. I have been a caregiver to my husband for 3 years now. He has a disease called autonomic neuropathy. Are you also new to CAN?
I care for my young adult daughter with Rett syndrome. She's had the condition since infancy, so we've grown with her through the disorder. I think that makes our lives a little easier, as we've had a chance to adjust with her changes and get used to them before she got larger.
The switch from pediatric to adult services has been a jolt, though, and leaves our heads swimming. We had been warned, but that isn't the same as being prepared.
Mark, you wanted to talk to a rare disease caregiver. I am one of those. My son has spinocerebellar atrophy, or SCA for short. It's been a long time and i think we've been through almost everything, at least i hope so. However,it's not over yet and the future looks...well not what one would like. Wiltingrose
my partner has ehlers danlos syndrome. it is a connective tissue disorder. thankfully hers is only minimally troublesome, meaning it has not affected her organs and vessels like the vascular type. But she has non-stop pain.