At the Turner Syndrome Foundation, we think it is important for girls with TS to feel supported by their community and form connections with others affected by the disorder. Thus, we offer patient workshops that educate people about Turner Syndrome so patients, family, and friends can better understand the associated health needs, because we believe in empowerment through gaining knowledge of the disorder. Patient workshops are also a great opportunity to meet others with the same condition to share your personal experiences and talk about the challenges of having Turner Syndrome. Did you know that studies have revealed that having a strong support system is an essential part of coping with chronic illness? Studies show that having social support leads to better health outcomes, an increased quality of life, and decreased mental health symptoms (Falcone et al.).
Additionally, we aim to support girls by helping them cope in a healthy manner, which includes talking about emotions and learning to manage them. “Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful (Turner and Kelly),” and we host patient workshops to provide a space for these discussions to happen. Not only is it beneficial to attend for the educational gains, but also to build a support system of people you can relate to and work through challenges with, which can greatly reduce stress. Jennifer, a patient who attended a workshop, shared her testimonial.
“I never felt judged, which often happens being the shortest person in a room. Furthermore, I met other girls with TS for the first time in my life. I finally didn’t feel like I was alone. I could talk candidly with them about what I am going through and what I went through as a child.”
We have an upcoming workshop planned for November 17, 2017 at the Montefiore Children’s Hospital, Bronx, NY. Please join us in this event to learn about Turner Syndrome and meet fellow TS families. You can register for free at the following link:
Can’t make it to this workshop? Work with us on bringing an event to your area! Email email@example.com for more information.
Falcone, Tatiana, et al. “Coping with Chronic Medical Illness.” Cleveland Clinic Center for Continuing Education, July 2014.
Turner, Jane, and Brian Kelly. “Emotional Dimensions of Chronic Disease.” Western Journal of Medicine, vol. 172, no. 2, Feb. 2000, pp. 124–28.