MUSC Bicentennial Alumni Weekend

I had the privilege of speaking at the MUSC Bicentennial Alumni Weekend with Dr. Chip Norris, Dr. Cortney Gensemer, and Dr. Sunil Patel on the necessity of multidisciplinary care for EDS patients, the incredible research being done in the lab, and challenged providers to recognize and diagnose EDS.

Exciting things are happening right now. MUSC is in the unique position to change the narrative for EDS because doctors are becoming fluent in the condition and scientists doing cutting-edge research. For so long, doctors didn’t take me seriously or believe me. It was so encouraging to have physicians and healthcare providers come up to me after the presentation and ask thoughtful questions on how to diagnose and treat EDS patients. It was evident that they were engaged and willing to have an open mind and learn. 

There is a future for patients like me. Teamwork between physicians, researchers, and patients has the potential to revolutionize patient care. Things are changing in this space, and I have so much hope. Embrace the power of your story and never stop sharing it, because it has the potential to ignite change.