n December 2020, at the age of 59, I was diagnosed with Ehlers-Danlos Syndrome – hypermobility type. I was fortunate to have found and seen Dr. Jacques Courseault
, MD, CAQSM, at Tulane University School of Medicine
, and he was the one who put all the pieces of the puzzle together and confirmed my diagnosis.
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts, such as the skin, muscles and ligaments. Faulty collagen in EDS patients causes weakness and hypermobility in the connective tissues. This results in a system-wide variety of chronic symptoms.
For 30 years I had suffered a variety of symptoms including chronic pain, hypermobility, osteoporosis, stretchy skin, fatigue, gastrointestinal issues, muscle spasms, TMJ, multiple root canals, Postural Orthostatic Hypotension (POTS), IBS, degenerative joint disease, and more than 15 surgeries. I had seen a variety of doctors, but each had treated only his or her own specialty and no one had looked at the “big picture” until Dr. Courseault.
I learned that EDS is a genetic disease affecting 50% of the offspring of those with EDS. Within weeks of my diagnosis, my 30-year old daughter was diagnosed with EDS and she, too, is being treated for the syndrome.
Dr. Courseault and his team
are amazing! Immediately upon diagnosis they set up a series of consultations with specialists in the areas of blood work, mast cell activation syndrome, cardiology, Physical Therapy, nutrition and much more. The Tulane EDS team has an incredible plan in place for each patient that includes following each one through a series of visits, and ultimately creating a lifestyle plan that covers all the different body parts that EDS impacts. While a diagnosis of a lifelong disease is not an easy one to hear, I am so excited to be in the hands of such a capable team that finally understands ALL of my symptoms and handles them in such a knowledgeable, compassionate manner.
Many thanks to Elizabeth for sharing her story!
Check out other resources on our site, or other great information from the Ehlers-Danlos Society.