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Blog: Living Mighty Well

Living With Turner's Syndrome

 Having two very short parents my short stature wasn’t exactly a surprise. I was born at 17” long (a size now mandated by law to require additional testing) and grew up just tall enough to fly under the radar. It wasn’t until I was about six years old when my parents noticed that while my peers were growing leaps and bounds (growth spurts are very common at this age) I didn’t seem to be growing at all.
 
In 2004 I was diagnosed with Turners Syndrome accompanied by hypothyroidism, and immediately began treatment for both in the form of thyroid medication and nightly growth hormone injections.
 
My family was terrified because more than being just short there were many complications I could be facing, including diabetes, ovarian failure, and most seriously heart abnormalities. I spent a week that fall at the National Institute of Health in Maryland undergoing every medical test imaginable, the most important of which being an intensive MRI of my heart lasting over an hour that showed that I, very thankfully, had a normal, healthy heart.
    
This being said, my experiences with this very visible condition have not been easy. At 4’9” I can expect to have a children’s menu offered to me upon entering a restaurant. I’ve struggled for many years with body image issues, and along with the high risk of ovarian failure, I’ve had to plan around whether or not I see my future including biological children— a decision I still find myself unprepared to make.
 
Tribulations aside, I am incredibly aware of just how fortunate I am. Since my diagnosis I have had the opportunity to meet many other girls with Turners Syndrome, who have spent most of their childhood having surgeries, struggling academically and socially, on top of having many learning and social disorders, which are also common with the disorder. I see it as such a blessing that this has not been my experience. My parents’ careers provided our family with insurance that covered injections that cost more than my college education, I have been under the medical care of an endocrinologist who is knowledgeable, proactive, and understanding, and I have the strongest support system I could ask for.
    
It’s important to note, however, that while I find myself surrounded with support and positivity, the most important part of coping with my condition is the work I’ve had to do myself. The most successful way that I have coped with these things is by looking at the bright side. I found ways to make peace with my body through dance, a hobby that has given me both confidence and tremendous joy (not to mention how much fun it is to be the one who’s always lifted), and I know that I’ll probably be carded until I’m thirty. My disorder has taught me not to take anything for granted, to be strong, and most importantly, that even though I won’t get any taller, I still have lots of room to grow.

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