I was eleven when I found out I had Turner syndrome. I so remember that day. I was at my cousins for the summer visiting. My mom called and asked me if I was sitting down. I told her no but I can. She then proceeded to tell me that they found out what was wrong with me. She then asked if I was willing to start taking shots to help me grow. I told her yes. That’s when our journey to all my doctor appointments started. I went to Michigan State University Hospital every three months, then every six months, then once a year and now I don’t go anymore.
I was in denial for years about having Turner syndrome. I stopped going to doctors for it. I felt like I was the only one with this. Then one day I woke up and decided I wanted to find others with Turner syndrome. I contacted my sister Jenni and she gave me the TSSUS (Turner Syndrome Society of the United States) website. I contacted them to see if there were any support groups around where I lived. They told me there was one in Grand Rapids and one in Detroit. A wonderful lady by the name of Mary met me in Battle Creek and that’s when I met someone with TS for the very first time.
We met a couple times then she introduced me to Connie. One day Connie emailed me and told me about a wonderful lady that was starting a group in Fort Wayne, Indiana. She asked me if I would like to go with her to support starting the group. I said sure since Fort Wayne is a lot closer to me. At the meet and greet I met a couple wonderful ladies. I met Emily and Beth who helped me through a lot of things. Then a couple months later Laura came to the group. These wonderful ladies are such great people to have as support.
I then found out from the group that there was a Turners syndrome conference every summer and the next one would be in Dallas, TX. I didn’t think I was going to be able to go due to financial reasons yet I was honored to be able to go due to Debbie Browne, with Leaping Butterfly Ministry, who sponsored me. It was a great experience for me as I met so many incredible ladies. Now I can’t wait to go to this year’s summer conference in Jacksonville, Florida.
If you haven’t found a group then call the national office at TSSUS. They will be more than happy to link you with an awesome group like mine.
46 years old
Amy on the far right.