anti synthetase syndrome

Posted by nancykay1888 @nancykay1888, Feb 12, 2020

My husband was diagnosed with this autoimmune syndrome in 2017 after spending 4-1/2 months in the hospital (59 in ICU). Normally it affects women with one in 100,000 people. It has affected his pulmonary system, muscles, blood, skin and you never know when something will pop up. He has wonderful doctors who watch him very carefully. Has anyone else ever encountered this syndrome or heard of anyone with it?

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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Hello @nancykay1888, I would also like to welcome you to Connect. I am sorry to hear about your husband's rare disorder. I read the link that @johnbishop provided in his post to you. This must have been very difficult for his doctors to diagnose.

If you are comfortable sharing more, what type of symptoms was your husband experiencing when he was in the hospital? I'm also wondering what type of specialist made this diagnosis.

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Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019 I have been searching all over for answer and other with conditions like me. It has affects my lungs muscles and joints. Your right this condition normally affects woman and usually older woman. I was also diagnosed with other conditions also with is that my doctor has told me has never been reported in combination with jo-1+ people and told me to report to Mayo Clinic’s which is what has brought me here… I am young and trying to find answers in any way that I can, I would be willing to share things about myself and any info I have received to possibly be of some help to your husband and anyone else reading this with this condition and I’d love input from anyone else l… it’s so hard to find answers.

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@jamieray6812

Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019 I have been searching all over for answer and other with conditions like me. It has affects my lungs muscles and joints. Your right this condition normally affects woman and usually older woman. I was also diagnosed with other conditions also with is that my doctor has told me has never been reported in combination with jo-1+ people and told me to report to Mayo Clinic’s which is what has brought me here… I am young and trying to find answers in any way that I can, I would be willing to share things about myself and any info I have received to possibly be of some help to your husband and anyone else reading this with this condition and I’d love input from anyone else l… it’s so hard to find answers.

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Hello @jamieray6812, I know it must really be difficult trying to find answers when you have such a rare disorder like antisynthetase syndrome. Along with the reference link above for the condition on the National Organization for Rare Disorders website, The Myositis Association website has information that you might find helpful.

– Antisynthetase Syndrome: https://www.myositis.org/about-myositis/complications/antisynthetase-syndrome/

If I understood your post, your doctors mentioned going to Mayo Clinic after you were diagnosed with antisynthetase syndrome. Have you setup an appointment with Mayo?

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@johnbishop

Hello @jamieray6812, I know it must really be difficult trying to find answers when you have such a rare disorder like antisynthetase syndrome. Along with the reference link above for the condition on the National Organization for Rare Disorders website, The Myositis Association website has information that you might find helpful.

– Antisynthetase Syndrome: https://www.myositis.org/about-myositis/complications/antisynthetase-syndrome/

If I understood your post, your doctors mentioned going to Mayo Clinic after you were diagnosed with antisynthetase syndrome. Have you setup an appointment with Mayo?

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Thank you! I set up a phone appointment today with Mayo Clinic

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