Turner Syndrome Hasn't Stopped me, EVER! by Emily Ryan

Hi, my name is Emily! My story starts right at the beginning, with my birth in 1975. As my mother tells the story, a very observant delivery room nurse looked me over and suggested something was different. Diagnosis came soon after. I am sure so many things seemed so uncertain at that early stage, but my mother remembers thinking "she acts like all my other babies!" I am the youngest of four, so I suppose her gut instinct was based on something.

My parents were directed early on to Children's Hospital in Washington, DC. We lived just outside DC. There happened to be a world-renowned pediatric endocrinologist, Dr. W Hung, who was based there. I have memories of going there and thinking what an amazing, huge, colorful place it was.

I received care there until I was about seven years old. At that point, my parents were told about a protocol being done with Turner syndrome (TS) patients at the National Institute of Health (NIH) – a very appealing idea as we lived almost within walking distance of that institution. I was a part of a protocol researching and treating TS patients with long term hormone treatment vs growth hormone.

That was the beginning of a relationship that lasted until about 2010. To say my file there is thick is an understatement! Fast forward to 2009. I was asked if I wanted to be a part of a new protocol. Over a three-day period, I had extensive medical testing, everything from simple hearing tests to a glucose tolerance test to a cardiac MRI. I passed them all, except for the cardiac MRI.

To jump to the end, I had open heart surgery in April of 2010 to redirect blood flow. I have had cardiac issues on and off ever since but I am overall healthy and have a wonderful cardiologist at the Johns Hopkins Institute. They also monitor my bicuspid aorta.

How has TS affected my life? I said to someone recently that strangely it has affected me much more as an adult than it did as child. I never felt "different" as a child, the way I do occasionally as an adult. Health issues connected with TS cropped up later in life for me.

That being said, I have not let it stop me, EVER! I chose a fairly physical career path working with animals for over twenty-five years. I had my twentieth anniversary working at the National Aquarium in Baltimore last spring. I realized very early I wanted to work with animals. I spent time working at the National Zoo in DC, Tracey Aviary in Utah, Busch Gardens in Tampa, and finally Baltimore. It can be physically taxing, but today it's more an age thing than a size thing.

I turned fifty this year (seriously, HOW did that happen so fast?!) and I am not ready so slow down, quite yet!