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We All Have Our Own Stories to Tell; This Is Mine

Greetings my sisters. I know we all have our own stories to tell... this is mine. Like all of you, we have our ups and downs. I truly mean it when I say I feel so fortunate on so many levels.

I was born in 1953, within 10 years of when Dr. Turner discovered Turner syndrome. I feel quite fortunate that my pediatrician was able to diagnose me at birth. My symptoms were textbook TS, including edema in the hands and feet, a webbed neck, and differing blood pressure in each leg, which is an indicator of heart involvement.

During my first year of life, I had 14 ruptured eardrums, which of course is part of TS. I was born with coarctation of the aorta. My family and I lived in the Detroit area. The pediatric cardiologist said there were no physicians in the area who were certified to do the surgery I needed yet. Depending on how soon I would need the surgery, my parents would most likely have to take me to Boston to have it.

As it turned out, I had the coarctation corrected at age 5, and they were performing that surgery at Henry Ford Hospital in Detroit. As the years went on, I saw the pediatric endocrinologist and was put on Estinyl and Provera at the age of 14 or 15. Growth hormone therapy was not available at this time, and ear tubes didn’t exist.

As the years went on, I went on to college - graduating with a degree in sociology, and then following up years later with a Master’s Degree in Public Administration with an emphasis in Human Resource Management. I had a 34-year career with the American Red Cross, providing emergency communications to members of the US Armed Forces and their families. I lived all over the world, including 4 years in Europe. I have lived a very full life and have had wonderful experiences.

I am now retired, and enjoy volunteer work on behalf of the Turner Syndrome Society of the United States (TSSUS), as well as other opportunities in the area. I have so enjoyed and benefited from my association with TSSUS. I have made many very close friends; friends who understand and have similar experiences. The people I have met are strongly committed to spreading the word about Turner syndrome, and educating our own caregivers about TS.

The recently revised Clinical Practice Guidelines for the Treatment of Girls and Women with Turner Syndrome and the Patient and Family version are invaluable. I have made sure each of my caregivers have copies of these.

It’s a full-time job, but it is important that we with Turner syndrome listen to our bodies, monitor whatever doesn't feel right, and recognize any problem areas. We know our bodies better than anyone; we know what works for us, and it’s important that we be proactive in our own healthcare with our physicians and providers.

Take care our yourself – we all want to be around to see what our future brings!

Dorothy Baume serves on the Board of Directors of the Turner Syndrome Society of the United States, and is the TSSUS North Texas Resource Group leader. Dorothy has served as a key volunteer in the TS community for many years, and provides support for people touched by TS. She is an invaluable member of the Turner syndrome community.


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