February is Turner Syndrome Awareness Month: Spreading Rare Disease Awareness

The month of February is recognized annually as Turner Syndrome Awareness Month, which is intended to help spread awareness about Turner syndrome among the general public and in the medical field. This event is a valuable opportunity to give advocacy and support for patients living with this rare disease a much-needed boost. This year, the Turner Syndrome Foundation (TSF) has activities prepared for each week so that it’s easy to get involved.

About Turner Syndrome

Turner syndrome, which is also called 45,X0 or 45,X, is a rare genetic condition in which a woman is partially or completely missing one of the X chromosomes. This rare condition is generally not inherited in most cases, but instead occurs during the development of the affected embryo and appears randomly. The signs and symptoms can be varied and wide-ranging between patients; however, they may include short stature, swollen hands and feet in infancy, a short, webbed neck, low thyroid hormone, infertility, heart defects, diabetes, low-set ears, low rear hairline, vision and hearing problems, obesity, and learning difficulties. There is no cure for the syndrome and treatment is mostly symptomatic and supportive; approaches may include estrogen replacement therapy, growth hormone supplements, and surgery; reproductive technologies such as in-vitro fertilization can help circumvent infertility. To learn more about Turner syndrome, click here.

Get Involved

Click here to stay up to date with the Foundation’s weekly activities for Turner Syndrome Awareness Month.

For week one, the organization has information about several different ways that you can help spread awareness about this syndrome:

  1. Sign the petition. The foundation has created a petition calling for lawmakers at every level to draft legislation that will help benefit patients living with this condition, who require care and monitoring throughout their lives. Click here to add your signature.
  2. Are you a member of the Turner syndrome community? Submit a photo of yourself and your image could be featured in a future awareness campaign. Click here to learn more.
  3. Create an online fundraiser to support the efforts of TSF. Click here to learn how to get started.
  4. Put your dance skills to the test. Have Instagram? Then take on the TSF’s Instagram Reels dance challenge. Check out their Instagram profile here to learn more.
  5. Spread the word in your local community. Click here to download and print flyer from TSF to put up.