What Turner Syndrome Awareness Means to Me

Blog Banner

Turner Syndrome (TS) Awareness Month is almost here; only one-and-a-half weeks to go! A keystone of the Turner Syndrome Foundation’s (TSF) mission is to raise awareness about TS, promote earlier diagnosis, and improve the lives of those with TS. We asked some of our supporters what TS awareness means to them, and this is what they had to say.

Voices of Awareness

Kayla, woman with TS, TSF Professional Member Liaison

Because it means women with TS are heard! If people know about it, then it improves treatment and quality of life for these patients. So many of our struggles are simply because people don’t know TS exists. 

Victoria, woman with TS

It teaches people about the rare and unique cases among TS patients.

María Bernarda, woman with TS, physician

Because it helps cases being diagnosed sooner.

"So many of our struggles are simply because people don't know TS exists."

Hannah, woman with TS

More kids will get treatment, such as growth hormone, when they are young and can use it. And they will get screening early for any cardiac and other issues so they can be dealt with.

Lori, mom of Julie, woman with TS, and TSF Board Trustee, volunteer

We need the medical field to do more research on how TS affects females throughout their lifetimes. We also need the education field to do more research into how TS affects learning.

Chris, husband of Susan, woman with TS, TSF Blog Coordinator

My wife has TS. She was diagnosed very late, and her health is important to me. I am very proud of her work with TSF and that she educates her doctors about TS and advocates for her care.

Jessica, woman with TS

Education/knowledge, proper medical care.

Nicole, woman with TS, TSF volunteer
TS awareness is important to me because it is very important particularly for medical professionals to have as much knowledge as possible about TS to assist them in caring for TS patients, so they can live happy and healthy lives.

"... a girl with TS can and will lead a perfectly normal life ... TS girls can do whatever they want, whenever they want."

Marie-Elena, mom of Gia, newborn with TS

TS awareness is important to me so we can educate about a rare syndrome, advocate that a girl with TS can and will lead a perfectly normal life, and that TS girls can do whatever they want whenever they want. I also want to educate families who have TS babies in utero how important blood sugar checks are and educate them on the proper prenatal care and proper newborn care of a TS baby.

Kym, woman with TS, TSF volunteer
I do it for all those affected by TS so there is earlier diagnosis and so teens, adults, and parents have a place to get information.
Sade, woman with TS
Not enough knowledge and research regarding TS is out there.
Helen, woman with TS, TSF volunteer & webinar presenter

Awareness of TS means early diagnosis, which means preventing health issues or possibly even death. It’s also important so that fellow “butterflies” don’t feel alone in their diagnoses and health journeys.

Gloria, woman with TS

I want everyone who is diagnosed with TS to have access to accurate information and good medical care. We need to raise awareness about the importance of those things.

Becky, mom of Baby with TS

If we don’t stand up for TS babies and be their advocates, then who will? If we don’t fight for these girls, then who will?

Join in the TS Awareness Month Fun!

Sign up for Awareness Month Updates

Sign up for Awareness Month emails and texts from TSF so you don’t miss out!

View the Awareness Month Kickoff Presentation

If you missed our TS Awareness Month kickoff presentation on Zoom last week, check out the recording. Learn more about TSF and everything going on for Awareness Month!

Visit the Calendar of Events

Be sure to check out our calendar of events so you don’t miss out on our daily and weekly challenges, some as easy as signing the Petition for Patient Care. You could win a prize! Also, join our and fundraising activities, like the Take a Step for TS virtual walk/run!

Get Your TS Awareness Month Gear!

We have lots of new, X Factor-themed merch in our shop for TS Awareness Month. You’re going to want to get yours to show your TS pride and raise awareness! Scroll through the images to the left to see just some of our fabulous items!

Download the Awareness Month Toolkit

The Awareness Month Tookit has everything you need to celebrate TS Awareness Month. Download it now to get information about TS, graphics, a printable coloring page for the kids, social media resources, and more!

Share Social Media Posts

Share the excitement on all your social media accounts! We’ve done the work for you. Download shareable posts on our awareness webpage.

Support the TSF Card Heroes Greeting Card Auction

Every year, professional and amateur card designers from around the world donate greeting cards to benefit our annual Card Heroes Auction, organized by TSF volunteer and Board Trustee Lori Kobular. You can already peruse some of the beautiful cards on her Instagram page. From February 1st through the 28th, you will be able to bid on the cards on Instagram, and they will be sent to the highest bidder. All proceeds benefit TSF’s mission.

What does TS awareness mean to you? Join us in February and all year to spread awareness!

Written and designed by Susan Herman, TSF Blog Coordinator. Edited by Caroline Walsh, TSF volunteer blog writer.

© Turner Syndrome Foundation, 2023

2 Comments on “What Turner Syndrome Awareness Means to Me

  1. Great stuff to read as we approach TS Awareness Month!! TS needs more recognition and understanding! Plus more research and education for both the medical and educational fields!!

Leave a Reply

©2023 Copyright Turner Syndrome Foundation - All rights Reserved.

%d bloggers like this: