My name is Gillian and I have a congenital, degenerative disorder known as Ehlers-Danlos Syndrome.
EDS is a genetic condition that causes the connective tissue in the body to be too flexible and elastic. Cartilage, the most prevalent of these, is throughout the body and not only cushions the joints, but connects muscle to ligament and tendon and forms a large portion of the heart and arteries. People with EDS suffer constant and multiple dislocations, severe joint pain and in some cases serious vascular disorders that can be deadly. There are various types of EDS and there are many co-developing conditions like arthritis, Fibromyalgia, irritable bowel and Scoliosis (to name only a few).
I have hyper-flexible joints that are stiffening as I get older resulting in severe osteoarthritis in several of my joints. Every day is a battle against pain and the side effects of medications I take to cope with it. I also have several co-conditions that are limiting also.
There are several member of my family that have debilitating medical conditions as well and I am their primary care giver. I have learned a great deal about coping with medical limitations and pain and I know that women are unique in the way they see themselves and their disabilities. My hope is that through this site, I can pass some of what I have learned on to those who might benefit from it.