Turner Syndrome Awareness Month: The importance of connecting with your local TS Chapter and beyond

Today is the last day of TS Awareness Month and I want to thank all of you who have come along for the journey. Today I’ll be talking about getting connected with your local TS Chapter as well as the national and global TS network and how significant it was for both me and my parents growing up. Living with a rare condition can be hard as you often feel like you don’t fit in and no one understands what you are going through. Many parents can also feel lost as to how to help their child cope with the challenges that their diagnoses presents. As a kid, connecting with my local TS Chapter and attending the conferences and summer camps gave me a place to meet and talk to other girls going through the same thing I was. It also allowed me the freedom to be who I was without fear of judgement, something I never felt at school. In fact, a TS conference was where I met one of my best friends to this day. For my parents, I know the conference workshops were extremely helpful in understanding Turner Syndrome, particularly the Non Verbal Learning Disorder piece, better and working with me to develop coping strategies.

As I moved into my late teens, I’ll admit that staying connected to my local TS Chapter became less of a priority and is something that I regret to this day. I struggled with feeling different as I watched my peers go through puberty and start to date and I got left in the dust. By the age of 16 and 17, this became harder and harder to swallow and for me, the TS conferences and events just served as a stark reminder of my differences both physically and socially. In hindsight, these feelings were exactly why I should have been attending events and talking to my TS sisters but at the time I was stubbornly trying to will myself to be normal. When I was 18, I was presented with an opportunity to write an essay on my experience with TS by the Turner Syndrome Society of the United States. They were reaching out to girls with TS all over the world to gather their different stories for a book that was being published called Standing Tall with Turner Syndrome. At this point I was still trying to live in denial about my differences but my mom gently encouraged me to take this opportunity to open up more about what living with my condition meant for me and I’m so glad I did. Although it would be a few more years before I re-connected with my local Chapter, this was definitely my first step back into the TS world and one that helped move me towards acceptance.

The last few years as I’ve faced more challenges related to my TS, I’ve slowly reconnected with my local Chapter and it has been such a blessing to know that I am not alone in my struggles and to get advice from my fellow butterflies. Of course COVID has put a hold on in person events and I’ll admit that I haven’t kept up with the regular Zoom calls, but I can’t wait until we can get back to meeting in person. For any girls with TS reading this as well as their parents, I hope that this encourages you to reach out to the support groups in your area and that just maybe you won’t feel so alone.

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