May is Ehlers-Danlos Syndrome Awareness Month.
The Cliffs Notes version is that Ehlers-Danlos Syndrome is a connective tissue disorder. My body makes bad collagen–super stretchy, slow to bounce back, slow to heal. And collagen is all over your body–skin, internal organs, tendons, ligaments.
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.
What is it like to live with EDS? It rather sucks most days, and on a really good day I forget about the pain and limitations. That’s my ultimate goal with EDS–to forget for an hour or two. Every day I am in pain. Every joint hurts–every one. I get dislocations regularly–mostly ribs, shoulders, knees, fingers, and wrists. What causes the dislocations? Moving…like getting out of a chair. I even dislocate joints in my sleep. Other symptoms include easy bruising, difficulty getting numb or knocked out with anesthesia, adrenaline spikes leading to difficulty sleeping, allergies to tons of stuff, slow healing from cuts and bruises, and really messed up digestion all the time. It’s all encompassing and very tiring.
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, though today I read an article about spider venom being used for chronic pain treatment. Since chronic pain is a big part of EDS this is definitely of interest to me, but dang yo…spiders. *shudder*
I currently do not take any pain medication at all (beyond the occasional ibuprofen). In the past I have taken pretty much any opiate painkiller that exists…they all have horrendous side effects including making you incredibly stupid and unfocused (at least they did for me). As such, I’ve sworn off those things for good.
If you’ve been following me for a while, this is not the first time you’re hearing about EDS. If you’re annoyed, you can stop reading now 🙂 But seriously…I do this every year to raise awareness, as trite as that might sound. The more people who know the symptoms to look out for (look below), the more EDS-sufferers who can get a timely diagnosis and treatment. It took me years of ER visits, specialist appointments, and genetic testing before all was finally revealed about what was wrong with my body. I don’t want that scenario to happen to anyone else.