A couple of months ago, I posted a collage of pictures of my life with Ehlers-Danlos Syndrome. It has been a while (and a heck of a lot of dislocations) since then, so I have composed an updated version - created using pictures taken from June to August, 2012:
For those who don't know, I have a connective tissue disorder called Ehlers-Danlos syndrome (EDS). Basically, this means that the glue that holds my body together is faulty because of a deficiency in collagen - a protein which gives skin, muscles, organs, blood vessels, ligaments, and other connective tissues in the body their strength and elasticity. Having faulty connective tissue means that I have extremely hypermobile joints that dislocate frequently, fragile and stretchy skin that bruises easily, and a host of other problems.
EDS is a genetic disorder that I was born with. However, I was not officially diagnosed as having EDS until I was in my 20s (by which time I had also developed ME/CFS and secondary fibromyalgia). I have been dislocating bones since the age of 11, as well as experiencing a myriad of other EDS symptoms. Over the years, my easy bruising, dental abnormalities, frequent injuries and illnesses, scoliosis, joint dislocations, and a randomly collapsed lung had all been put down to a weak immune system or benign hypermobility. Unfortunately, my symptoms worsened as I got older. I was referred to lots of specialists, cardiologists, rheumatologists, consulting physicians and orthopaedic surgeons, and it eventually became apparent that I had EDS.
At the time of my original collage, in June 2012, I was dislocating an average of two joints per day. Unfortunately, my condition has worsened considerably over the last couple of months. I now dislocate joints around a dozen times per day. My doctor has tripled my dose of morphine so that I can deal with the pain, and try to live as much of a life as I can (although, often I am stuck in bed). The joints that I dislocate most often are my jaw, ribs, left wrist, fingers, thumbs, shoulders, elbows, hips, knees and a bone in my foot that keeps popping out to the side. It is really scary to think about the damage that is being done to my joints from all of the dislocations! I already have osteoarthritis in my left hand and thumb, both hips, and my right knee and foot.
I now wear braces, splints and tape each day to try to keep my joints in place, but the tape burns my skin if I wear it for more than a couple of days in a row. I also use a wheelchair, mobility scooter and crutches to help me to get around. I like to decorate my mobility aids so that they look pretty and glittery - I don't like drab grey!
Anyway, I snapped the pictures in the collage above over the last couple of months. They may not be pretty or flattering, but I have put them together in a collage for a couple of reasons: The first is that I would like to raise awareness of Ehlers-Danlos Syndrome, and I reckon that pictures speak louder than words. The other reason is more personal, in that it's hard for me to look back at all of the injuries I have had - but at the same time, it makes me feel kind of powerful - like 'this is how strong I am - I survived and I am still smiling' ;D.
Thanks for reading this uncharacteristically long post! =D If you would like to learn more about EDS, please follow these links:
- What is EDS
- Rei's Life with EDS video
- My old blog post
- American National Foundation
- EDS Support in Australia
- PubMed Health
- Wikipedia Article
