@gardrums123 hello, again. I see that you’ve come back still looking for someone else who has GFAP. It’s really unfortunate that your request in May didn’t elicit any responses. When your doctor said the disorder was rare, he really meant it. I first joined Mayo Connect, there were no responses to my query about my autoimmune disease. Through Mayo, i have found 6, but they are all experiencing the disease differently.
Can you ask the doctor if he has treated anyone else with GFAP and could you talk to them?
Do the doctors consider your husband stable currently? Is he receiving physical therapy for the balance issues? And seeing an ophthalmologist for his vision issues?