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But You Don't Look SickMay is Ehlers-Danlos Syndrome Awareness Month.

I have Ehlers-Danlos Syndrome.  I will always have it. It doesn’t go away.

So, each May, I try to assist in raising awareness of this relatively rare genetic disorder. You can read my posts from previous years (20092011, 2012, 2013) for details on what EDS is and how it has affected my life.  In short, Ehlers-Danlos Syndrome is a connective tissue disorder. My body makes bad collagen–super stretchy, slow to bounce back, slow to heal. And wouldn’t you know it, but collagen is all over your body–skin, internal organs, tendons, ligaments.

What is it like to live with EDS? I am doing better now than ever. Fortunately, each year seems to get better as I get stronger, exercise more, and treat my joints gently.  But the truth is that I still live every day in pain. Every joint in my body hurts, all the time. My spine and wrists are the worst. My elbows are relatively pain-free.  But I get weirdo random dislocations on an ongoing basis. I freaked out the poor boyfriend a few months ago when 30 seconds into a foot massage, the cuboid bone in my right foot dislocated (yes, it freaking hurt).  A couple of weeks ago I dislocated a vertebrae worse than I’ve ever done before…the vertebrae pushed forward into my body about 1/2″.  It’s still there, still out, still too painful to go to a chiropractor to get it popped back in. I was laid up in bed for 2 days. And how did I dislocate my vertebrae? I was standing up from my desk at work. That’s how random the dislocations are.

Besides the dislocations, the ongoing day to day symptoms are just something I and other EDS-sufferers learn to live with. Chronic joint pain, bruising easily, not being able to sit still comfortably,  taking forever to heal from cuts or bruises, having messed up digestion all the time, having an inordinate number of allergies and chemical sensitivities, and trouble being properly anesthetized (try waking up during a surgery or suddenly un-numbing during a root canal).  You just learn to deal, eventually.

There is no cure for EDS. There is research going on and the first ever center for Ehlers-Danlos research is due to open in August at Towson Hospital’s Genetics Program in Baltimore.  I’m thrilled with this progress!

I am still  off of all pain medications and play to remain so for the rest of my life.

I’m asking for understanding and awareness. If you see people, especially children, in your life who dislocate joints, have chronic pain, digestion issues, heart problems, or who bruise or cut easily–ask the doctor about EDS. Since I went public with my diagnosis in 2009, I’ve had a few dozen blog readers come to me and say they or a family member have now been diagnosed with EDS after reading my post, recognizing symptoms, and asking their doctors. And that’s why you have to suffer through my annual May post about EDS.

To learn more about Ehlers-Danlos Syndrome, check out the Ehlers-Danlos National Foundation and the Ehlers-Danlos Network.

“Happy Ehlers-Danlos Awareness Month”

  1. Paul Signorelli Says:

    Grateful, as always, to have you writing with and for all of us who are better for having learned from you than we otherwise might be.

  2. Alice Pidgeon Says:

    So sorry to hear about your illness. I can’t imagine living with such pain every day. I had a bad reaction to medication I started taking for CML (a chronic type of Leukemia) in January and the joint pain was excruciating. Fortunately, it’s now a fleeting once in a while thing, but I need to put up with digestive upset (from the same medication) almost every day. I truly empathize and will find out more about your illness. Living is such an education.

  3. Lori Says:

    I’m sorry. Truly sorry to hear this. My son and I understand chronic pain, and your cartoon could not be more accurate. You gave me information I did not have before. I was not aware of the healing issue with this condition. I knew about the rest, but not that issue. Our SJSU SLIS professor told us about your site, so I am new. Thank you for posting and thank you for speaking up about chronic pain and chronic illness. Sometimes, I could cheerfully bite heads off and spit them in the bushes when I hear someone say, “But you don’t look sick.” Best to you.

  4. Corine Says:

    Before I was diagnosed I mentioned how I always had back pain and someone told me “You’re too young to have back pain!” Um, thanks, tell it to my back.

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