It’s May, so I’m going to do what I do every May–remind you of a rare disorder that I suffer from–Ehlers-Danlos Syndrome (EDS). May is Ehlers-Danlos Syndrome Awareness Month. May is also, incidentally, National Blood Pressure Month, National Hamburger Month, and National Salad Month (just ruminate on that for a moment until your head explodes).
Ehlers-Danlos Syndrome is a connective tissue disorder. My body makes bad collagen–super stretchy, slow to bounce back, slow to heal. I was diagnosed in my late twenties. Diagnosis can take many forms–ultimately I had genetic testing. But the first tier of diagnosis is the Beighton Test. If you score 4-10, it’s likely that you have EDS. I scored a 9.
There is no cure for EDS. The first center for Ehlers-Danlos research has opened at Towson Hospital’s Genetics Program in Baltimore. Stem cell research holds the most promise for treating the disorder at the DNA level.
Like most EDS patients, I hurt every day but I personally made the choice years ago to not take any pain medication beyond the occasional ibuprofen.