Tara Dulohery

I have Mosaic Turner Syndrome. This means is that I have a partial loss of a second X chromosome. In a staggering statistic, 2% of all pregnancies with Turner Syndrome survive. For those of us living with Turner Syndrome, this causes multiple chronic illnesses. I have endometriosis, early onset glaucoma, kidney disease, chronic ear infections and hearing loss, osteopenia, infertility and more. I am all of 4’ 10” and display a lot of the classic features of Turner Syndrome - small chin, broad shoulders, out turned elbows and more. Mental health issues are also a big part of Turner Syndrome and that has been one of the hardest parts of my journey.

I advocate for Turner Syndrome women because it is so unpredictable, and because awareness among doctors can save lives. To me this means strongly promoting self-advocacy because it is the key to our wellbeing. For us, doctors may be looking at “common” illnesses separately but not understand the big picture. Insurance doesn’t usually work in our favor either, so part of my advocacy journey is a hope to make our healthcare and insurance providers aware of our unique syndrome, so we are not ignored, and our diagnoses are not missed. Advocacy to me also means being there for those who share a similar journey. Finding those who deal with what I deal with has been very encouraging. It is important to me to remind all my Turner Syndrome friends that they are not alone, doctors should not ignore you, and your life matters.