A New Diagnosis Can Be Isolating - by Elizabeth Dabrowski, MD, TSSUS Board Member

I have always loved children and advocating for the health of all children and the best possible medical care for everyone has become a tenet of my practice. In medical training, I had a few patients with Turner syndrome, and they were some of the sweetest, most endearing young women I have worked with. My TS clinic is still my favorite day of the month despite landing on a Monday!

I had the pleasure of seeing my patients with TS regularly and watching them grow, both literally and socially/emotionally over time. 

However, the majority of patients I have personally diagnosed have come to me after the age of 12 and the diagnosis impacted them much differently than younger girls. This age is particularly difficult for all girls (I still tell people 7th grade was the most miserable year ever!) and I can only imagine how isolating a new medical diagnosis must feel. 

I became more involved with TSSUS to advocate for a community for girls (and parents of girls) with TS so they do not feel alone in their journey and can meet other women, girls and families who have traveled a similar path. Additionally, I have worked with various societies to advocate for better recognition of Turner syndrome at younger ages and referral for testing and evaluation. TSSUS is the primary advocacy group for women and girls with TS, and I felt that working with them would not only help make me a better physician but we could also work in tandem to advocate for advances in TS care and improvement in diagnosis.