What is EDS

Ehlers Danlos Syndrome or EDS is a genetic connective tissue disorder causing defects in collagen. Collagen acts as the “glue” to hold your body together, so a problem with your collagen is a problem with your connective tissue.  Since connective tissue covers over 95% of your body, EDS effects the skin, bones, blood vessels, eyes, organs, and your joints. It’s pretty poopy!

The Six Types Of EDS

There are six different types of EDS which vary from mildly loose joints to life-threatening complications related to tissue structure and fragility. All share joint laxity, soft skin, easy bruising, and some systemic manifestations.

Tenascin-X deficient

Type Three EDS Hypermobility

Those of us born with EDS Hypermobility have daily dislocations of both large and small joints such as the shoulder, knee, hips, and jaw…and all this can occur just from sleeping! Chronic joint and limb pain began early on in life for me but because I was athletic, my family and I always assumed my injuries were due to the sports I played. My most serious dislocations all occurred during heavy activity. I dislocated my knee during karate, my shoulder playing football, my kneecap during field hockey, my shoulder when swimming. The physiotherapy I was doing for these dislocations didn’t seem to help. One day during another MRI for my shoulder, a totally random doctor approached me and my mom and suggested that my chronic dislocations might be due to EDS. I had never heard of it before so I began my exploration of EDS and was soon diagnosed. EDS is diagnosed based upon the clinical findings of the patient and the family history, and currently there is no cure for it, only daily management.