The Most Important Thing for Me is Having Friends with Turner Syndrome - by June Amodeo

My Turner syndrome (TS) story started when I was diagnosed at birth, and a lot of my youth was spent at the Children's Hospital in Pittsburgh where I was born. TS is not a "cookie cutter" situation. While we deal with some of the same things, I deal with some things that are different than my other TS butterfly sisters.

There is not a manual on how to deal with life with TS while always feeling different than other women without it. Sometimes, people don’t realize how what they say at times  can be hurtful, and what it’s like to be a woman who has no control on whether or not you’ll be able to be a mom by having a healthy baby. Many don’t understand what it’s like to have the numerous upon numerous medical appointments that last a lifetime.

If I had a penny for every time someone said to me "you sure do have to go to the doctor a lot" or a doctor said "your numbers are pretty much at baseline but because you have TS, we have to be careful and monitor you more", I would be a millionaire! I have liver enzyme issues, have to keep an eye on my heart, and just had to kick skin cancer’s backside this week (we make moles). I am part of the 2% that made it home from birth, so that is where my internal strength comes from – that and my Lord and Savior. 

I will be 52 years old in May and He had a whole journey for me in His plans! I have come along way from the days when I was a little girl. If I saw that my dad was getting off at the exit where Children's Hospital was, I would unbuckle myself and try to grab the steering wheel (I was a hot mess!). Anyone who ever has met me knows that I am a chip off the old block from my cute Italian Pops and am never going to give up. He taught me that there was nothing I couldn’t do, and I smile when I think about how proud he would be that I started a new career mid-life and got my insurance license.

The most important thing, other than medical professionals familiar with TS and family, is having friends with TS. I was 35 before I met someone else with Turner syndrome, and now I have a whole sisterhood with my TS mafia! I’d like to give a special thank you to LaShelle Jennings who has taken more 911 calls from me than I can count when I was just over it!  She will always be the cutest TS butterfly in America.