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Recently Diagnosed - Astrocytopathy

Posted by sery @sery, Aug 31 10:36pm

Hi.. I was diagnosed with Autoimmune GFAP Astrocytopathy early this year. Recovery has been a battle but I've been doing great. Had to relearn to walk, but I did it. I still struggle with what I fear are permanent deficits. I've finally worked up the courage to actually research my diagnosis, as its really uncommon..
I just want to know I'll be okay, yknow? There's so little information and no one to talk to. I'm sure my friends are family are tired of hearing me complain.
Anyway I'm reaching out to people that also have gotten an autoimmune diagnosis to see if maybe someone understands these feelings.
-Serynna, USA

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 1 5:27pm

Welcome @sery, You are definitely not alone. You might want to read through the following discussion to connect with other member discussing GFAP.
-- Has anyone been diagnosed with GFAP: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-gfap/

You also might find the article listed in the discussion above helpful for learning a little more about the condition.

Here is a link to the same article and another one that is similar:
--- Autoimmune glial fibrillary acidic protein astrocytopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522205/
--- Autoimmune Glial Fibrillary Acidic Protein Astrocytopathy: A Review of the Literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6290896/
You mentioned that although recovery has been a battle you have been doing great. If you don't mind sharing, what was the most difficult part of the recovery?

REPLY
1 reply
sery | @sery | Sep 4 12:02pm
In reply to @johnbishop "Welcome @sery, You are definitely not alone. You might want to read through the following discussion..." + (show)
@johnbishop

Welcome @sery, You are definitely not alone. You might want to read through the following discussion to connect with other member discussing GFAP.
-- Has anyone been diagnosed with GFAP: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-gfap/

You also might find the article listed in the discussion above helpful for learning a little more about the condition.

Here is a link to the same article and another one that is similar:
--- Autoimmune glial fibrillary acidic protein astrocytopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522205/
--- Autoimmune Glial Fibrillary Acidic Protein Astrocytopathy: A Review of the Literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6290896/
You mentioned that although recovery has been a battle you have been doing great. If you don't mind sharing, what was the most difficult part of the recovery?

Jump to this post

Thank you for the resources. Regarding my recovery, my CNA was what was targeted, and turns out with out a proper nervous system, you can't really walk lol. So at the ripe age of 22 I was using a walker. I am now almost 23 and can fully walk and run for short distances. I also have an accommodative dysfunction (essentially my eyes spasm when trying to focus them) so being back at school is a real learning curve. Thank you for asking.

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