Monday, July 12, 2010

A Sensitive Subject

You've probably heard of Down Syndrome, Tourette's Syndrome and Stockholm Syndrome, but have you ever heard of Turner's Syndrome?
Named after Dr. Henry Turner, who discovered the syndrome in the 1930's, Turner's Syndrome affects 1 in every 2,500 girls. At birth, these girls are born with part or all of their second sex chromosome missing, causing short stature, reproductive difficulties, as well as other physical characteristics and medical complications.
Those are the facts. This is the reality. Diagnosed at birth, I had multiple surgeries, including heart and kidney surgery, and a feeding tube placed in my stomach all before my first birthday. The feeding tube is long gone and I haven't had a major surgery in sixteen years but thing aren't exactly normal. For about ten years of my life I took growth hormone shots every night to help increase my height as much as possible. Good thing I didn't play M.L.B. Now at 4'11'' I am considered a tall Turner's girl!! After the shots I started taking Estrogen pills, which I will continue for the rest of my life. No hot flashes!! A few years later I added Progesterone to start my cycle. To make sure everything is going well I am followed yearly by an Endocrinologist and a Cardiologist and get blood taken before each visit, my least favorite thing. I am a hard stick.
I am not sharing all of this to evoke sympathy. Other than what I've mentioned above, I've had a normal life. I owe that to my incredibly supportive parents, sibling and extended family. In fact, I was lucky. Because each case is different, most Turner's girls are not diagnosed until they realize they have not gotten their period around the age of sixteen. By then it's too late to start growth hormone treatments. No. I am writing this to bring awareness to the little known disease. And to all the young Turner's girls: there may be times you think you can't have a normal life but don't give up. Still go for your dreams; buy those stylish jeans even if they need tailoring; join the soccer team even if all the other players are a inches taller than you; and don't be afraid to learn to drive, seats can be moved closer to the pedals.
I am stronger because of Turner's Syndrome and I wouldn't trade my life for anything.


  1. Hi Jenn,
    I was lucky enough not to have any surgeries related to my Turner syndrome. However, Turner syndrome is and always will be a huge part of who I am today.
    I also wrote a post i my blog that you will hopefully have a chance to read.