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nancykay1888 (@nancykay1888)

Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: Jul 18 1:56pm | Replies (63)

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Hello @nancykay1888, Welcome to Mayo Clinic Connect. I did a search of Connect and was not able to find any discussions on Antisynthetase Syndrome. It must be difficult for you that your husband has such a rare disorder. It's great to hear that he has a good group of doctors who care for him. Have his doctors done any treatments or therapies that help his symptoms?

I was not aware of the Antisynthetase Syndrome and had to look it up. I found some good information describing the condition on the National Organization for Rare Disorders website — https://rarediseases.org/rare-diseases/antisynthetase-syndrome/

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Yes, his doctors are "miracle workers." They constantly monitor him and he has had all kinds of therapy. He was in a medical induced coma for over three weeks while the doctors worked with trying to diagnose what he did have. Dr. Jivan and Dr. Dama from Christ finally diagnosed him. After they brought him out of the coma (he was on a ventilator for more than three weeks and then they performed a trake (sorry about my spelling). He had to learn to do everything again and of course that took at least two years of therapy for different functions. There is so much I could tell you about those days but it's hard to put all the memories here.