I Still Have Ehlers-Danlos Syndrome

Many EDS related internet sites are promoting May EDS Awareness month. This is one of the great articles related May EDS awareness.

Sara tells us her story!

“May is Ehlers-Danlos Syndrome Awareness Month. What is that, you may ask?

If you’re a longtime reader of my blog, you’ll know that I have Ehlers-Danlos Syndrome.

You can read my posts from previous years (2009, 2011, 2012) 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 collagen that is messed up on a fundamental level. Collagen is everywhere–skin, internal organs, tendons, ligaments–so bad collagen = bad lots of other stuff.

What is EDS like for me? I live every day in pain. Every joint hurts. I just don’t notice it so much anymore, but if you stopped me on any given day and asked “Sarah, does your X joint hurt?” I would undoubtedly say yes after thinking for a moment. I can feel every joint at every moment of every day, some more than others. I get fewer dislocations than I used to but rib, wrist, and knee dislocations are still common for me. I have to be careful with how I sit, move, and interact with other objects and people. I bruise easily and my skin tears easily, and subsequently it takes me forever and a day to heal. My digestion is pretty jacked up. I have quite a few allergies and chemical sensitivities, one of those weird side effects of EDS.

There is no cure for EDS. All I can do is manage the symptoms.

As I wrote last year, I am still off of all pain medications. YAY! Want to know which pain medications? Almost all of them. I tried dozens and was on several for a very long time and at very high doses. And the meds made me, well, not me. I’m so glad to be off of them.

Recently a doctor tried to give me oxycontin for a bunch of dislocated ribs and when I turned it down he got this look on his face like I’d just turned down a few million dollars. I explained why: that it had been so hard for me to get off of these medications and I never wanted to walk down that road again. He rolled his eyes. Such is the common reaction I get in the medical community. Exhibit EDS symptoms without an official diagnosis and they think you’re either mental or that you are a drug-seeking fiend. Have the same symptoms with an EDS diagnosis and turn drugs down and they think you’re an idiot.

I have to be very selective with doctors and other medical practitioners, finding people who either are familiar with treating EDS patients or are willing to learn. Case in point: I drive over 90 minutes to get to my dentist, the only person in the SF area I’ve found who knows what she’s doing (EDS also has lots of dental, jaw, and soft tissue symptoms). The good news is I have a great primary care doctor, dentist, gynecologist, and chiropractor. Still looking for a new massage therapist after my last one changed careers to rehabilitate abused horses (but how can I be mad at him for that?).

In the interest of keeping positive, here are some positive things about having EDS:

Through posting on my blog and on local and international EDS support networks, I have communicated with hundreds of other people with this disorder. Sometimes they support me and sometimes I support them. They’re a second family, of sorts–a family that inherently understands what my life is like without ever having met me.

I can do fun/scary party tricks with my joints that freak the living hell out of people, especially people under the influence of something. It’s my ace in the hole for the “Wait, wait…watch this” game.

My skin is simply amazing. Take that, skin creams and face lifts!

As with past posts I want to make clear I’m not asking for pity in any way. 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 9 librarians and 11 other readers come to me and say they or a family member have now been diagnosed with EDS after asking their doctors (and going through the usually months-long process of referrals, tests, geneticist consults, etc.). And that’s why I talk about it–so fewer people have to wait until their mid-twenties or later to get a diagnosis.

To learn more about Ehlers-Danlos Syndrome, check out EDS Awareness, the Ehlers-Danlos National Foundation , Ehlers-Danlos Network, and a resource list built by fellow librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources. “