#Women’sHealthResearch Matters

     As an individual or a group, there are lots of opportunities to be an advocate for healthcare equity and to make a true difference for women with TS. Advocacy takes many different forms, and your experience as an advocate can be tailored to your unique interests and skill sets. Legislative action is a wonderful way for advocates to invoke change at the governmental level. Currently, there is a petition through TSF that would help to bring awareness of TS to state and federal representatives, which could help to implement policies designed to improve patient care for women with TS. Patients with TS may require lifelong specialized care and support. Due to the rarity of the condition, there is a lack of both knowledge and resources for TS care. This petition would raise awareness, improve accommodations, resources, support, and insurance coverage for women with TS. You can take action by signing the petition.

  Women’s health has consistently been under researched. In fact, including women in clinical research was not mandatory by law until 1993, only 30 years ago. This has left women to only be able to hope for adequate treatment with the current minimal understandings that exist of their health and bodies. 

     Dr. Jill Biden and Maria Shriver have taken the initiative to bring change to our current landscape of women’s health. If they genuinely care about bringing awareness to women’s healthcare, we urge them to include awareness and research for Turner Syndrome in their initiative. 

     Turner Syndrome (TS) is the second most common genetic disorder, affecting only females. It is estimated that the disorder affects 1 in every 2,000 females, and that one baby with TS is born every eight hours.

     Despite the common occurrence of this condition, there has never been enough research or attention to support the number of women who are diagnosed with TS. Furthermore, most women receive the diagnosis later in life, causing them to miss out on significant prepubescent treatments such as growth hormone.

     The condition can also cause women to need up to 13 different specialists once they are moved out of pediatric care, pushing parents and women into an expensive whirlwind of confusion trying to find answers in a healthcare setting that does not adequately represent or understand them.

It’s time for this representation in research to exist. If you truly care about research for women’s health, Turner Syndrome must be a priority in your initiative. 

We at the Turner Syndrome Foundation are prepared to support the Women’s Health initiative, if you are prepared to support the community of women with TS.

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