Life isn't Always Easy, But it's Always Worth It!

Growing up, I always knew there was something different about me. I had a major surgery when I was five years old to correct a kidney problem. I saw a urologist every year to manage other issues I had, including a horseshoe kidney and frequent urinary tract infections. When I was about eight years old, I was diagnosed with Turner syndrome.

From what I understood about it, Turner syndrome wasn’t bad at all. So, I told myself I wouldn’t let it get in the way of my living a normal life - despite the challenges. The challenges of all the doctors’ appointments, surgeries, daily growth hormone shots, being bullied for being short and for having a lazy eye (which was later corrected with surgery), and things in daily life that Turner syndrome made more difficult.

A little while later, I found out I was infertile and had my ovaries removed. I didn’t really care at the time - not because I couldn’t understand it - but because I was so young, I didn’t feel like it was happening to me directly. It was an odd feeling.

Around the same time, I learned I have a bicuspid aortic valve. While I see a cardiologist every other year, it has not presented any problems yet. As I have gotten older, I have realized that Turner syndrome affects my life more than I thought it would. Despite this, I still live every day as normally as possible, because I know it could be worse, and I have a great family who has given me a wonderful childhood and whom I don’t want to disappoint. Besides, there are a lot of ways Turner syndrome has not gotten in the way.

Even though many girls with TS struggle with math, I did better at math throughout high school than both my brother and sister, and have successfully taken two college-level calculus courses. Despite the fact that when my mom learned about the poor motor skills girls with TS can have, she was afraid I would never ride a bike; I have been riding a bike for years and have obtained my driver’s license.

I am now a sophomore at the University of Michigan and feel very grateful to be where I am today, knowing how lucky I am. I will never forget the lessons growing up with TS taught me, and I will forever be grateful for everything my parents did for me to receive the best care possible so that I can be where I am today. This life isn’t always easy, but it’s always worth it.

Additional Resources

Link to Information about the Kidneys in Turner Syndrome

Link to Patient Guide to Turner Syndrome and the Heart

Download the patient and family friendly version of the Clinical Practice Guidelines for the Treatment of Girls and Women with Turner Syndrome here

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The Turner Syndrome Society's mission is to

advance knowledge, facilitate research, and support all those touched by Turner syndrome.

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