Turner Syndrome and Me

Lovers!

It's been ugh...awhile! So much has happened (never you worry...we will catch up in time!) But tonight I want to talk with you about something near and dear to me....because I am a Turner Syndrome girl and I have recently learned there is a whole month dedicated to TS awareness! How cool is that?!!

First of all you may be saying what in the actual are you talking about? I have never even heard of Turner Syndrome! Let me give you some basic facts. It is chromosomal and strictly effects girls...about 1 in 2,000 in fact.  Girls who have TS either have a mutation or complete deletion of the X chromosome. This often leads to severe health problems most often with the heart and kidneys. Many TS girls have to under go open heart surgery or are stuck on dialosis due to a U shaped kidney all of this as young girls or babies.  Other areas that can be effected are the inablity to have children, vision problems, academic issues especially in math class.  Every TS girl is short, very short most under 5 feet tall. Both of my parents are extremely tall 5"11 and 6'4"....I am 5'2" and very tall for a girl with TS.  I often wonder how tall I would have ended up being if I was "normal",  Perhaps I would have made the volleyball team in 7th grade ;) Let's be real, that had nothing to do with my height and everything to do with my lack of sport skill!

So what has this looked like for me?  Growing up I struggled in math class. I was a typical high achiever and made good grades but always struggled in math. I never understood why until I learned I had TS.  Child bearing is probably nothing more than a wish now.  Obviously, God is much bigger than any "syndrome" should He see fit.  I have had a high blood pressure diagnosis since I was around 18.   All that is to say I am extremely blessed and lucky.  These are very mild, easy to deal with symptoms and complications.  Some girls don't even make it out of womb alive because their heart defect is so great.  I count my blessings everyday.  I am also very fortunate that my parents are who they are and I had extensive testing done on basically every part of my body that could have been effected and all came out well.  I thank God each day that my parents faced it head on, not knowing what would be found with such strength, that in turn gave me strength when we were all unsure of how a test would be returned.

I am not really sure why we refuse to talk about things like this.  I say we because for the longest really, until a few weeks ago,  I would acknowledge the fact that I had TS at the doctor's office for their knowledge  but pretty much after that it was like it wasn't a part of me.  My eyes were opened when I ran across a post for TS Awareness month.  I began doing more research on this huge part of my life. This is not something that will ever go away so I may as well learn about it, was my thought. What I gained from researching was an understanding of much of what I dealt with and didn't know why as a child/teen and an even bigger understanding of how extremely lucky and blessed I am. God protected me from the worst of a potentially horrible disease/syndrome.

I am not sick, I am not ashamed, I am proud that I can spread awareness of something few know about and even fewer speak about.   The butterfly is the symbol of the TS community, it's a beautiful  choice because the butterfly to me is a symbol of something who goes through a struggle and comes out the other side even more beautiful. In my opinion that is a perfect fit for every girl with Turner Syndrome.

Until next time Lovers!

XO!