Previous versions of this post were originally published in February 2021 and October 2022.
The Turner Syndrome Foundation (TSF) is wrapping up its celebration of TS Awareness Month (TSAM) for 2025, but its mission to promote awareness and advocacy for TS will continue every day. TSF hosted several awareness, advocacy, and educational initiatives throughout the month, which you can read about here.
As a woman with TS, it is so heartwarming to see people come together to spread awareness about the condition and help improve the lives of TS patients and parents/caregivers. Always remember that you are enough!
Why TS Awareness Month Is Important to Me
I was diagnosed with mosaic TS at the age of 19, during my sophomore year of college. As you can see in the graphic to the right, only 1-2% of fetuses with TS will survive to birth, which is a pretty stunning fact. I didn’t learn this until just a few years ago, and it floored me. But then I thought about it. What an incredible opportunity those of us with TS have been given to show our strength and resilience!
Often, TS and other medical disorders are framed as what is “missing.” In general terms, we are missing an X chromosome or have an incomplete one. We may not be able to have biological children. Or we may have challenges due to certain cognitive issues or learning disabilities, like non-verbal learning disorder (NVLD). Sometimes we are limited because of our physical challenges, like short stature, hearing loss, kidney and heart issues, and autoimmune disorders.
Well, I am here to tell you that, despite these challenges, you are enough. You can be whatever you want to be and do whatever you want to do. And you can do it at your own pace and on your own terms. You are not “missing” anything. Your presence adds beauty to the world because of the challenges you have faced and the steps you have taken to cope with them. You are always enough!
Why the Butterfly?
Those of us with TS are often referred to as butterflies. A friend recently asked me why that was, and I have to admit that I didn’t have a great answer. So I did a little research. As Karen, a woman with TS recently said in a TSF Facebook Live performance event and discussion, it may be because butterflies are delicate but strong. Or because they are small but make a huge impact on the world. Maybe because they are so diverse and come in many beautiful colors and patterns, like women with TS.
One of the descriptions that really touched me was from an episode of Butterfly TV on YouTube. I encourage you to watch this five-minute video. Brooke Gonsalves talks about how the original logo came from genetics–the X resembling a butterfly with its wings spread. As awareness and support for the TS community grew, the butterfly symbol came to represent the metamorphosis from a difficult beginning (the caterpillar) to its emergence as a strong, beautiful being (the butterfly).
The butterfly has become a symbol of strength and perseverance for the TS community. We have overcome health, emotional, and social challenges and emerged stronger. So claim the butterfly symbol! You are enough!
Using My Hobby for Advocacy
One of TSF’s hallmark TSAM initiatives is the annual greeting card auction, hosted by TS mom, TSF Board member, and advocate Lori Kobular. Year after year, this is a wonderful way for people worldwide learn about and support the cause. The After the Auction Buy-It-Now Greeting Card Fundraiser offers an opportunity to purchase cards, and they can be mailed for you!
I started making holiday cards several years ago. Every year, I make about 70 cards to send to friends and family. I love putting a smile on their faces, knowing that their card was made with love by me. Below are some cards I entered previously. My inspirations were butterflies, of course, and positive messages related to TS. “You are enough” came to mind first, for the reasons I explained above.
Positive Affirmations Project
For TSAM 2022, TSF created a positive affirmations video featuring several TSF volunteers and advocates. As creator Gaby Lamdagan said at the end: “Lifting ourselves and each other up is something that is very important but we do not do enough. This is your chance to be a part of the change that needs to happen.”
So, how about it? Why are you wonderful?
Written by Susan Herman, former TSF Blog Coordinator. Designed by Delvis Rodriguez, Data Management.
© Turner Syndrome Foundation, 2025
