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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).

You can read my posts from previous years (20092011, 2012, 2013, 2014, 2015) for details on what EDS is and how it has affected my life.

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.

To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation and the Ehlers-Danlos Network. Or just ask me!

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