Has anyone been diagnosed with GFAP

Where did you receive treatment? My father was diagnosed. We live in Orange County, Southern California. I try to find a hospital or doctor nearby that specializes in treating this disease.

I’m so sorry for your father’s diagnosis of this . It is almost impossible to find a doctor who has ever heard of it! Every doctor we dealt with never did.
We live in the NYC area. My husband was in Mt. Sinai Hospital. The doctor there referred all of his test results to the Mayo Clinic. They were the ones that diagnosed him and recommended what his treatment was. His treatment was a high dose of steroids orally, a immunosuppressant and several supplements that tapered down each month. He did this at home.
So far he able to walk again, but deals with lots of other issues from it.
If you read others that were treated, they had different treatments.
I wish you all the best in this rare and frustrating disease.

Thank you for your information. Do you mean I can use a doctor in Irvine, and the doctor can ask the Mayo Clinic to develop a treatment plan? Or will the patient stay at home and be treated remotely by the Mayo Clinic? Does Mayo Clinic accept medicare？

Unfortunately, I have no advice to give even though I have the diagnosis myself. I live in Europe, so have received treatment and diagnosis here.

I have had major problems with mobility and balance. I had major inflammations in both the brain and spinal cord. Also had problems with memory, vision problems, weakness and tremors in the arms and legs. After treatment (see previous post above) and physiotherapy, I have almost regained my normal functions. But I still suffering from fatigue though and continuing to slowly build up my physique.

I really hope you find a doctor who can help your father and that he receives treatment.

Yes. If your doctor is open to it, you can have him contact the Mayo Clinic to see if they will help with a treatment. My doctor was told what the treatment would be and then we were under his care. According to him after that the Mayo is finished with you.
Not sure if the Mayo takes Medicare, I would think they would. We are older so we didn’t have the motivation to actually go to them. Not sure how old your Dad is.

I live in South California. My father is treating at China. He is the second patient that diagnosed with GFAP in the hospital. The last one died of lymphoma one year after leaving the hospital. My father is incontinent, his limbs are weak and he cannot walk by himself. After testament, he can walk a few steps. My father is taking Prednisone Acetate Tablets and Mycophenolate Mofetil Dispersibe Tablets. Taking these, he has risk of lymphoma and other malignancies. I don’t want the same thing happen to him. I try to find a better treatment plan for him in USA. What kind of prescription are you taking?

@gardrums123 Good evening and Welcome to Mayo Clinic Connect. This is an online forum for people to ask questions and get answers and help from other members. I found this site because I, too, was diagnosed with an autoimmune brain condition. I was so stunned by the diagnosis, that I wasn’t comprehending anything that was said to me. Once I got help at a university hospital and started treatment, I was able to begin to understand. My husband really took charge and made sure i was everywhere I needed to be. Now, 6 years later, no one would ever know that I have an autoimmune disorder. There is hope!
I looked up GFAP and it is rare, so I’ve never heard of it before. While we wait for other members to join our discussion and help you with answers, please feel free to ask me anything you would like and I’ll try to answer.
Were you given any information so that you could become an expert on GFAP? Has your husband started treatment?

Could I know what kind of prescription and does you take after you left hospital? After testament, my father can walk a few steps. He is taking Prednisone Acetate Tablets and Mycophenolate Mofetil Dispersibe Tablets. Taking these, he has risk of lymphoma and other malignancies. The other patient in the same hospital died of lymphoma one year later after he left hospital. That makes me worry a lot.

He was on the same treatment as your father when he came home. Now he is on no treatment and is able to walk.