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Antisynthetase Syndrome: Anyone else?
Autoimmune Diseases | Last Active: 16 hours ago | Replies (95)Comment receiving replies
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.
Replies to "Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019..."
How have you been since being diagnosed? What kind of doctor diagnosed you?
Hi @jamieray6812 , just following up with you to see how you're doing. My 34 year old daughter was also diagnosed with this and has 2 small children and works full time. Who did you make your appt with, and have you figured out a way to manage your symptoms? Please respond.
This is almost too good to be true. I was feeling alone in this battle with this disease. Please count me in on sharing my life dealing with this. I am a 75 year old woman…have other health issues.
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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?