“I’m Ira, a social worker, advocate, influencer and mom living in Berlin. I started my Instagram account when I was diagnosed with Sjogrens syndrome after a long doctor’s marathon. I had to listen for almost 1.5 years that my unbearable pain and severe symptoms are all because I’m a mom and because of that alone I’m stressed and tired. I think this is called medical gaslighting.
At some point I began to have serious doubts about my self-perception. Until at some point the suspected diagnosis of MS came up. During the further examinations it turned out that it was not MS that bothered me but the lesser-known Sjogrens. Found out because I have both a positive ANA titer and highly elevated anti-Ro antibodies. Sjogrens is an autoimmune disease from the rheumatic-inflammatory type and is systemic, which means it can ultimately affect the whole body. Sjögren’s is counted among the collagen diseases and was long known as the dry eye disease (sicca symptoms). Anyone who is affected by Sjögren far beyond dry eyes can only smile wearily at this classification. And it is so hard to explain to friends what it‘s really like when even doctors still don‘t know…
My main symptoms are muscle aches; fatigue; lesions in the brain; hair loss; dry skin and eyes; brain fog, etc….
I have been on hydroxychloroquin for 1.5 years now and I have to say I’m ok sometimes, fine most days. There are still bad days and really bad days but not quite as many.”