You Are Enough!

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A version of this post was originally published in February 2021. 

The Turner Syndrome Foundation (TSF) has begun planning for Turner Syndrome (TS) Awareness Month in February 2023. TSF will host several awareness and educational activities throughout the month. One of them is the annual Greeting Card Auction (see more information below). 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 couple years ago, and it floored me. But then I thought about it. What an incredible opportunity we with TS have been given to show our strength and resilience!

Often, TS and other medical disorders are framed as what is “missing.” We are missing two complete X chromosomes. 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 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 add 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 Buttefly?

Only about 1 in every 2,000 fetuses with TS survive to birth.

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 (Turner Syndrome: Why a Butterfly?). I encourage you to watch this five-minute video. Brooke 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!

Greeting Card Auction

Now for some fun! Among a bunch of fun and informative challenges throughout TS Awareness Month in February 2023 is TSF’s third annual Greeting Card Auction will be held. Card designers (both amateur–like me–and professional) design and donate greeting cards, which supporters can then bid on to support TSF. These card designers are from all over the world and provide information about TS on their personal pages/blogs to help spread awareness. 

TSF extends a special thanks to volunteer and Awareness Committee member Lori Kobular, whose adult daughter has TS, for making this awesome event happen! Lori is an avid card designer, and she has a wealth of information and craft work on her TSTurner Syndrome Journey blog. She also donates cards to TSF for sale in its online shop (Send a Gift section) 

Lori is looking for card designers to make and donate handmade greeting cards for the TS Awareness Card Auction that will take place during TS Awareness Month in February 2023. If you are interested in being a card hero for TSF, please send Lori a message on her Instagram page (see below) or at lkobular@tsfusa.org. This event not only raises awareness of TS

TSF's TS Awareness Month 2023 theme

but also generates funds for TSF to provide support to families dealing with TS and for more research! You can view and bid on cards on her Instagram page (mulchlady6) in February!

My 2022 Projects

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. Last year, I entered the three cards for the Card Auction. My inspirations were butterflies, of course, and positive messages related to TS. “You are enough” came to my mind first, for the reasons I explained above. This is one of my cards.

I had so much fun making cards last year and am working on my submissions for February 2023.

Positive Affirmations Project

Along the lines of the “you are enough” theme, TSF created a positive affirmations video featuring several TSF volunteers and advocates. Click on the video to the right to see the project.

As creator Gaby Lamdagan says 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. Share your unique affirmations in the comment section below.” 

So, how about it? Why are you wonderful?

We Need YOU!

TSF needs volunteers to help with multiple TS Awareness Month 2023 activities. Some tasks include:

  • marketing and promotion,
  • graphic design,
  • blog writing,
  • creating and/or implementing daily challenges for supporters, and
  • much more!

If you are interested in helping to plan and execute TS Awareness Month 2023, email awareness@tsfusa.org, and if you haven’t already, complete the online volunteer application.

Written by Susan Herman, TSF Blog Coordinator.

© Turner Syndrome Foundation, 2022

6 Comments on “You Are Enough!

  1. Susan your cards are all amazing! I love the sentiments you used on them and you are so right that “You Are Enough”! It is so important for TS Girls and Women to know they are Xtraordinary and are Enough! Thank you so much for sharing your cards with us for the “It’s A Girl Thing” Turner Syndrome Awareness Blog Hop and Card Challenge! Your blog post is awesome too!! I love the explanation of the Butterfly symbol!!

  2. Thank you Lori, and thank you for making this amazing event happen!

    • I plan for this event all year long!! I love spreading awareness in a fun and creative way! Thank you for sharing with us!!

  3. Susan, Thank you for sharing your story, helping to spread the word of Turner Syndrome and how amazing these girls and women are. It is only through people like yourself, Julie, Lori, Missy… that others like myself learn about TS. Your card, story and support is greatly appreciated. I am proud to be a sponsor of TSA challenge. Stay safe, healthy and happy crafting!
    Hugs,
    Jan

  4. Just gorgeous Susan! I’m so proud to help Lori in spreading the word about TS. Stay safe & healthy!

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