Susan Herman is a woman with Turner Syndrome and a volunteer blog post editor for TSF. This is her story.
“I was lucky enough to find the Turner Syndrome Foundation and other support resources. It has meant a lot to me to meet other women with Turner Syndrome.”
My Turner Syndrome story starts with a very late diagnosis. Growing up, I was always tiny, and I failed to develop normally during adolescence. However, my pediatrician never put the pieces together. It caused embarrassment that all of my female friends were developing normally, and when people assumed that I was younger than I was. But I didn’t have a lot of the outward physical characteristics of Turner Syndrome. Despite not taking Growth Hormone Therapy, I ended up being 5’4″, which is quite tall. Finally, during my freshman year of college, at 18 or 19, I decided to consult with the genetics department at the University of Arizona, and I was diagnosed with mosaic Turner Syndrome.
The geneticist immediately put me on estrogen and progesterone therapy (I later switched to birth control pills because they were easier to take and less expensive). The doctors did not really tell me much about the disorder, other than that I would most likely not be able to have children. I decided to do a lot of research to find out about other conditions related to Turner Syndrome but did not immediately require treatment for any of them.
Transitioning to Adulthood
During college, I experienced a lot of grief around infertility, wondering how that would impact future relationships. I worried about missing out on the experience of having children. Despite the shock and grief after my diagnosis, I had a very successful college career and ended up earning my B.A. and M.A. I did not experience any learning disabilities in school, but I noticed that my verbal skills were much stronger than my math and spatial skills.
Growing Into Acceptance
“Turner Syndrome does not define me; I define how I live with it.”
As I became older, I learned to accept my Turner Syndrome diagnosis and all that it entailed. Over the years, I have developed several related conditions–celiac disease, diabetes, heart issues–but have learned to manage them, one day at a time. I have educated both myself and my medical providers about my unique needs, which makes me feel more in control. Turner Syndrome does not define me; I define how I live with it.
Connection to the Community
Last year, I was lucky enough to find the Turner Syndrome Foundation and other support resources. It has meant a lot to me to meet other women with Turner Syndrome (I was 50 before that happened!) and to find out how much of a miracle we really are. Despite all of my research, I did not realize until recently that only 1-2% of us survive to birth. Amazing!
Where I Am Now
After many years working in the social services field–mostly with sexual assault and domestic violence survivors–I now work for the Federal Government as a linguist and analytic editor. I have a wonderful, loving husband whom I married 12 1/2 years ago. We are both quite happy with our childless but cat-filled household.; Whiskey, Stoli, and Sambuca keep us busy and entertained constantly. I recently became a volunteer blog post editor for TSF, which helps to keep me busy during this pandemic. I look forward to meeting more of you and hearing your Turner Syndrome stories.
We would love to hear from you! If you would like to share your story, please do so on our website. Make sure to check back next week to hear from Susan about volunteering with TSF.