Jenny: A Turner’s Syndrome Success Story

 

Jenny Ryan is a beautiful young woman with Turner’s Syndrome, a rare illness affecting females and one of the illnesses associated with the highly sensitive trait. Turner’s Syndrome is a genetically based condition, which affects an individual’s development and may cause other illness, such as cardiac conditions.

Turner’s Syndrome is caused when the second sex chromosome is either partially or totally missing and is found on one out of every 2500 female children. Apparently it is not easily diagnosed and early diagnosis is key to helping a girl with Turner’s Syndrome grow and develop and handle the condition so that she can have a happy life. Turner’s Syndrome is most easily observed from physical characteristics, which can include short height and slower than average growth, lower hairline, drooping eyelids, and a wandering eye,

Jenny was one of the fortunate girls whose condition was diagnosed at birth, so she received early and comprehensive treatment.  I am grateful that Jenny was willing to share her experience. This is Jenny’s story in her words from her blog:

 “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.”

Jenny was fortunate to have so many caring people including her family to help her. But as  you can see, she needed many surgeries, hormone therapy and frequent monitoring of her health including cardiac system. She will need health care for her whole life. The good news is that she is now a writer for Turner’s Syndrome Foundation and has a full life.

It is wonderful to see what is possible with an early diagnosis of Turner’s Syndrome. Highly sensitive people are often most easily identified through their stress and sensory problems.  However, genetic conditions come in all forms and so a highly sensitive girl can have Turner’s Syndrome as well.  Growth and height issues are worth checking out to ensure that if a girl has Turner’s Syndrome she has a chance like Jenny for a full life.

 

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Maria Hill

Maria Hill is the founder of Sensitive Evolution. She is the author of The Emerging Sensitive: A Guide For Finding Your Place In The World. In addition, she has created the immersive Emerging Sensitive Program of "sensory processing yoga" using frameworks to help sensitive people master their sensitivity and turn it into the asset it can be. She also offers the Emerging Sensitive Community focused on living in the world as a sensitive person and navigating the challenging cultural shifts of our times. She is a longtime meditator, reiki master, student of alternative health and Ayurveda. Maria is also an abstract painter whose portfolio can be found at Infinite Shape and also very interested in animal and human rights and the environment.

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