Turner Syndrome (TS) is a rare disease caused by the partial or complete absence of the second sex chromosome. It is grossly underreported because 95% of fetuses who have the condition die in utero. However, when those with TS are diagnosed and given the proper care, many patients can lead normal, prosperous, and fulfilling lives.
A New Program
The Turner Syndrome Adult Comprehensive Care Center at UT Physicians was formed by Siddharth Prakash and Michelle Rivera, two professors at The University of Texas. They now serve as co-directors of the center.
It is one of the very first adult programs in the United States to be designated by the Turner Syndrome Global Alliance (TSGA) as a specialty clinic. The TSGA works to develop guidelines for Turner Syndrome specialty clinics around the world. To earn the designation as a TSGA clinic, the group must follow the international TSGA guidelines, network with advocacy groups, conduct collaborative research, allow TS patients to schedule same-day visits, and educate the community and healthcare professionals on the latest TS news. There are currently close to 30 pediatric TS clinics that have earned this designation. The TSGA has just begun identifying adult TS clinics.
The center at UT Physicians provides care for the common medical issues/side effects that accompany TS. These include diabetes, autoimmune disorders, hearing loss, heart abnormalities, and swelling in the limbs. Patients are able to see all of the specialists they need in one trip which can make a world of difference. This is especially important because half of the patients who attend this clinic are not from the Houston area. They are able to travel to the one site and have all of their needs met.
Another perk of this system is that all of the specialists have access to the patient’s data and are able to collaborate with one another more easily to determine the best, multi-pronged therapeutic approach for each individual patient.
In addition to patient care, the center also works closely with the Leaping Butterfly Ministry and the Turner Syndrome Society of the United States, two nonprofits which support those living with TS. The contributions of these organizations include free screenings, educational presentations, and the sponsorship of hearing aids for those affected by the condition.
Moving forward, this center believes their new TSGA designation will help them better connect patients with research being conducted around the nation, translating it to clinical care in their own backyard. They also believe that the designation will allow them to better collaborate with other TS specialists at other TSGA designated centers. This could establish critical investigations that wouldn’t otherwise be possible.
Future goals of the center also include creating an educational program which would allow fellows and junior faculty members at UT to participate in both the research and care run by the center. Additionally, they plan to create a database that includes patient data from the variety of specialists over time. They hope this will bring new insight into how the syndrome changes overtime, which could lead the way for new and innovative TS research.
Ultimately, this new designation is just one more step improving the comprehensive and multidisciplinary care that TS patients need and deserve. Initiatives like these, as they spread across the globe, could have significant impacts on TS patient outcomes.
You can read more about this new TS clinic in Houston and the TSGA here.