February is known for a lot of things: Valentine’s Day, being the shortest month of the year, and the month the Broncos won the Super Bowl. But it’s also known for being Turner Syndrome Awareness month. This is a month very close to my heart, due to the fact that I am a girl who has been affected by Turner Syndrome.
What exactly is Turner Syndrome? Turner Syndrome is a chromosomal abnormality that affects one in 2,500 live female births and out of the number diagnosed, only two percent survive. Statistics have actually changed: when I was born, there was only a one percent chance of survival. The defect that causes Turner Syndrome is the absence of one of the X chromosomes — a female without Turner Syndrome has two X chromosomes. Okay, now that bio class is over, I can tell you really what life with this is like.
At the age of two months old, my parents were given the diagnosis that would change my life and theirs forever, they were told that their daughter had Turner Syndrome. Imagine finding out that your child, who you thought was healthy and would live a completely ‘normal’ life, wouldn’t. Actually, your child had a one percent chance of survival, and nobody really knew how to advise them on how to deal with this.
The information on the internet is misleading and can make you think that things are contrary to what they actually are. It's confusing and scary. I can’t know what it was like from my parents' perspective, and up until about the age of eight, I was none the wiser to being different. However the way I found out that I had Turner Syndrome was actually quite ironic and humorous in some aspects, my parents and I had gone on a cruise and on this cruise, there was a little boy about my age who appeared different to me. One night at dinner, he was bouncing around at a table across from us, and I asked my parents why he looked different than others (mind you, at eight this is considered highly perceptive). My parents responded by telling me he had something known as Down Syndrome. With a nod and a smile I moved on from that--for a solid two minutes before I looked up and asked them if I had a syndrome (see, perceptive). Of course, they weren’t going to lie, so that fateful night was when I learned I had Turner Syndrome.
Once I learned about my diagnosis, things started to make sense, more doctors’ visits, more surgeries and more missed classes. I began to understand why everyone else could reach their backpack hook at school but I couldn’t. I didn’t know the extent of my issues, but my parents seemed to know what they were doing, so I went along with it. To this day that’s my mentality, except now it’s because God and my parents that know what they’re doing. Thirteen years after finding out about my Turner Syndrome, I’ve gone through the wringer, between ear issues that caused me to lose a good chunk of my hearing, getting chronic toxic swelling in my leg known as lymphedema and still ending up short. This is only a small portion of my daily struggles, because along with not being able to reach the top shelf in the refrigerator or being able to run, the little things like hospital stays and missing out on certain rights of passages (I’m looking at you summer camp, overnight hike and freshman year of high school) takes a toll on your soul.
Maintaining a positive outlook is so important, but it’s not always the easiest thing. I can’t tell you that I deal with my Turner Syndrome, because I honestly don’t. Every day I have to get up and make the choice to fight, and I'm not always so strong. My faith in God and my relationship with my friends and family keeps me going: they’re my strength and I will forever be grateful. I think that’s the case with anything in life; no matter who you are and what you have, having something to believe in and believing in yourself is so highly important.
Turner Syndrome is not a black and white disorder. It affects every girl in different ways. But at the end of the day, we are all connected by a bond that very few can understand. It is with my sincerest hope that I did the community proud and was able to inform everyone about Turner Syndrome — even just a little — and what we have to go through. We are smart, strong, beautiful and have the ability to be very persistent in the pursuit of our dreams. We can do anything we set our minds to, just sometimes in different ways. We are special and unique and will be the people who help change the world.
I am proud to call myself a girl with Turner Syndrome, but I won't let it be the defining fact of who I am. In the story of my life, this is just a minor part. This is a taste of my life’s story thus far. It’s being written every day and I can’t wait to see where it goes!
If there are any questions on Turner Syndrome, please feel free to contact me, I am more than happy to answer any questions. Or go to www.tssus.org
