Turner Syndrome Symposium at Hackensack University Medical Center

Imagine yourself as a young girl smaller than your peers who is verbally gifted but has issues with social skills. You have lived your young life with a complex medical condition until the fateful day that you are diagnosed with Turner Syndrome. Suddenly all you and your caregivers seek are answers—what is Turner Syndrome, what will my future look like, what will I need to think about to take care of myself? You have all of these questions yet you also feel a sense of relief knowing that there is a name to explain all the issues you have been dealing with.

You and your parents do some research into Turner Syndrome and find out that it is actually the second most common chromosomal abnormality in females affecting 1 in 2000 females in the United States. There is no cure but there is hope in the treatments available including growth hormone therapy and estrogen therapy to develop normally. Hopefully you have been diagnosed at an age when the growth hormone therapy is still a viable treatment option so that you can exceed the average height of a woman with Turner Syndrome-4’8”. Do not be alarmed but the average diagnosis for Turner Syndrome is 15 and for these girls it is an urgent time to try to catch up on all therapies.

You have a strong desire to meet other girls with Turner Syndrome and discover the Turner Syndrome Foundation, a nonprofit advocacy organization dedicated to increasing awareness and advocating for girls and women affected by this complex condition. The foundation has great resources available including an informative monthly e-newsletter, a regularly updated website, and active social media channels. You connect with them by signing up for their newsletter and find out about their large-scale awareness movement, Team TSF, and that there are patient education programs available that provide opportunities for patients with Turner Syndrome to connect with other patients and develop lasting relationships.

One upcoming patient education program is coincidentally local to you—a Turner Syndrome symposium at Hackensack University Medical Center on June 7 proudly being sponsored by the Turner Syndrome Foundation and the Molly Center for Diabetes and Endocrine Disorders. There will be a support group there for girls between the ages of 5-17 affected by Turner Syndrome and informative sessions facilitated by medical professionals affiliated with this major medical institution. This could be the opportunity you were looking for all along. Your parents can find out more about how to manage your healthcare and about possible health issues that girls with Turner Syndrome may experience while you can meet other girls with Turner Syndrome. It is truly a win-win situation for your family!

If you are a patient, a parent of a child with Turner Syndrome, or simply have a family member with this condition, consider registering for the symposium by calling the Turner Syndrome Foundation’s office at 732-847-3385 or registering online by visiting www.turnersyndromefoundation.org/events-patient.html. To find out more about the Turner Syndrome Foundation, please call 732-847-3385 or visit the foundation’s website at www.turnersyndromefoundation.org.