When is turner syndrome awareness month

We strive to serve as a Regional Resource for the community as well as physicians in our community and have been recognized by the TSGA Turner syndrome Global Alliance as one of only nine clinics nationwide with a Level 4 designation. As we highlight these resources for the Turner Syndrome Awareness Month this February , and celebrate the strength and tenacity of our beautiful girls, we hope our efforts will improve recognition of the condition and delivery of comprehensive medical care and support to the community we serve.

Share List. Kyra Dorfman, Dr. Shankar and Gracie. You might also like Facial analysis technology successfully used to identify Noonan syndrome in diverse populations. Maureen E. Challenges Experienced So Far: Elvie is still so young. My biggest challenge is reminding myself she is simply my baby and in no way should I compare her to others. If you have any hesitation, make a change — you will forever be her biggest advocate so start early.

At 30 weeks pregnant, I made the final decision to switch to a doctor who has experience and also recommended a pediatrician and endocronologist for Elvie who had experience with Turners. If you know us personally, keep asking us… Every single day is a new and exciting day for us.

Elvie was given life and I find every reason to shout this to the mountains. Her diagnosis was confirmed a couple of days after birth. Additional Support or Resources Provided: From the doctor, little if none. We met with a genetic counselor, but it was all doom and gloom. Sounds cliche and it might not be the version of OK that you envisioned in your head, but I cannot imagine my daughter any other way than the way that she is right now.

You have to advocate for your child. Do research, talk to other moms, push the doctors and trust your instincts. Oh and save lots of money because dang, growth hormones are expensive!

What Do You Want Others to Know : My daughter is just like your daughter, just a little smaller, a few more medical issues, and honestly probably smarter — ok just kidding, but seriously this kid is a riot. She brings a smile to all she meets! When and How Diagnosed: At our 20 week ultrasound, she was found to have a cystic hygroma on the back of her neck.

My OBGYN had us do the Verifi -prenatal genetic test to help determine if there was a genetic disorder playing a role. We then met with a genetic specialist prior to Verifi results who presented us with information on Turner Syndrome, Noonan Syndrome and Down Syndrome. Based on the ultrasound, they were feeling confident that our baby had TS. Additional Support or Resources Provided: We met on occasions with a genetic counselor to better understand the diagnosis and how much it can vary in girl to girl, as Turner Syndrome is truly a spectrum.

Prenatally, this included maternal fetal medicine, endocrinology and cardiology. Once she was born, additional people were added to her team. We have so many TS-themed merchandise designs available in our online shop! If you order a shirt, sweatshirt, hat, mug, or something else, be sure to share a photo of your item on social media and tag us TurnerSyndromeFoundation.

Stories on Instagram are increasingly popular, and stickers are a great way to add to them! We have created many different stickers to raise awareness of Turner Syndrome. To use them, follow these steps:. It is time for care for the Turner Syndrome population to be prioritized by policy makers! Show your support for this community by signing our Petition for Patent Care and share it with others.

The more signatures we get, the greater impact we can have! You will also receive an email after you have signed the petition, providing you with a graphic that you can post and a flyer you can print to show your support online. Share a photo of yourself for the chance to see yourself on our social media pages! Additionally, you can select a digital photo frame that we will personalize and send to you, which you can post online to raise awareness.

You can easily create an online fundraising page through our website. When your friends and family make a donation, they support the Awareness Month activities we have planned as well as our year-round awareness initiatives. A group of TSF volunteers have created a fun and simple dance challenge you can do on Instagram Reels!

Make sure to tag us turnersyndromefoundation so we can see your take on the dance. This is a great way to raise awareness! Can you think of somewhere in your community that you could post a flyer?

Maybe a coffee shop or library near you has a community bulletin board, or your workplace has a break room where you can hang things on the wall.

A TSF volunteer, Jasmine, created a new flyer for Awareness Month this year, which is perfect to download, print, and post! The group works to brainstorm, plan, and implement projects that will increase the awareness of Turner Syndrome. Follow our YouTube channel to see all of the video uploads!

Turner Syndrome Foundation. Easy Ways to Raise Awareness Now. Take the Next Step. Contact your legislators Ask your doctor to host a workshop Host a fundraising event Ask your employer to sponsor TSF Sign-up to volunteer.

Request a Toolkit for Awareness. Awareness Committee.