First, some background on my first journey, which began as I was born. At just six weeks old, my parents had to endure having their infant daughter operated on due to pylorostenosis, which was blocking my stomach and preventing me from holding down any food. Later, when I was six years old, I had spinal meningitis. My parents had no idea that those two health crises might be related by a complex genetic condition.
As a child, teen, or adult, I never minded being short. I did mind the ear infections, but I had no idea there was a connection. When I hit my preteen years, I started to wonder about the changes I saw and heard about other girls going through, and while part of me worried about when it would happen to me, a part of me was also relieved that it hadn’t yet. But when nothing happened by the time I turned 16, my pediatrician had me tested to find out what was going on. The next thing I knew, I was in a hospital where I spent at least two days. My memories of that time are hazy, but I do remember watching Princess Diana’s wedding (and struggling with the volume control that was blaring loud enough to wake the person next to me). I also remember having full body pictures taken, which leads me to believe my testing was also part of some kind of research. Alas, I can find no evidence of that, and while the testing proved I have TS, neither I nor my parents thought to save the relevant details, like the karyotype, so I don’t know if I am classic or mosaic (something I’ve been trying to find out this year).
After the testing, and finally finding out a name for what I had, I took growth hormones for awhile which gave me a couple more inches before my bone plates had sealed. Knowing I could be a bit taller if I’d started taking them sooner didn’t bother me. I don’t know if it bothered my parents, but I hope not. After that, I didn’t think about TS for years until a doctor told me I needed to take hormones because I was in danger of getting osteoporosis and needed the estrogen. Even then, it was just something I had to do, and I didn’t really think of TS beyond that.
It wasn’t until a friend of mine told me about seeing a segment on television about a mother who was told her unborn child had TS that I became more curious about my own case, and my second journey to find a community of other girls and women like me truly began. The Internet had come along far enough that I was able to find out more information fairly easily, and I was surprised to discover how many of the health issues I’d faced as a child could be traced to TS.
Eventually, I found my way to the Turner Syndrome Society of the US website, still in its early days, and learned they had yearly conferences. As much as I wanted to attend one, I didn’t think it would be possible due to time and money restraints. Then I got an email from Darlene Hay, a mother of a girl with TS who was starting a much needed South Florida organization to raise awareness, inviting me to one of her first events. She has incredible energy and passion and has organized some excellent fun and educational events in the area. We in South Florida are so lucky to have her. And, this year, she helped make it possible for me, at the ripe young age of 51, to attend my first TS conference in Cincinnati, Ohio. I was, and still am, humbled by the hard work and generosity that made my trip possible, but I have learned that it is a trait of TS women and those who care about them to support and advocate for each other in any way possible.
I arrived on the Friday afternoon of conference weekend, so sessions were already going on and I jumped right in. Since I was late, I had to sit in the back of a session and missed out on a lot due to my poor hearing. I vowed to sit in the front, like a good student, from then on! The warm, welcoming vibe helped me feel right at home. The poutine and gin I had in the hotel pub didn’t hurt, either! The icing on the cake was meeting my hotel roommate and hitting it off immediately; she’s also a teacher with hearing loss, and as we discussed our challenges, I lost track of the times I said, “Me, too!”
Saturday was kicked off by the general meeting. The Team Turner sports team helped charge the atmosphere full of positivity and excitement. Then we all went to different conference rooms, and looking at the program, I was once again surprised by the sheer variety of topics of interest for women and girls with TS and their families. From diet to driving (both potentially big challenges for women with TS), organization to foot care, there was something for everyone there. Speakers were all experts in their fields, offering their contact information in case we had questions beyond the sessions’ time limit. And we could partake in the educational or social activities that interested us (although at times it was hard to choose which session to go to!).
That day, I also learned about and became part of the Turner Syndrome Research Registry which has been set up as a way for women with TS and families of girls with TS to create a storehouse of information to help further knowledge and understanding about TS. If you haven’t already, please go to http://www.turnersyndrome.org/#!ts-registry-love/cpe6 and fill it out. It isn’t long, but it is so important for everyone to offer what information they can to help all girls and women with TS and their loved ones.
Sunday was the closing session, then a final series of sessions; I chose to go to the one about financial planning – who doesn’t need help with that these days? Finally, there was a special treat – a cruise down the Ohio River. All too soon the conference was over, but my roommate and I spent one more night there, and I learned about some potentially helpful technology to help with my hearing issues.
Through the careful planning and festive spirit, the conference was a truly joyful and educational event that both fostered mutual support and teamwork and honored our individual paths. I hope my story has helped inform those who read it who are unsure about participating in local events or going to a conference. It is so worth it. I was, indeed, hooked, and hope I will be able to get my fix again in the future.
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