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MjAxMy0wMWNkNmNkMzBmMGFiNzYxIt’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.

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

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.

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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“Annual reminder of Ehlers-Danlos Syndrome Awareness Month”

  1. Jacquie Says:

    Yesterday’s Chicago Tribune had an article yesterday about a mother and daughter with Ehlers-Danlos: http://www.chicagotribune.com/news/ct-mother-daughter-violinist-met-20150508-story.html#page=1

  2. Susan Says:

    This would be great if the Beighton score test were legible. Can you please make it bigger? Thanks.

  3. Sarah Says:

    Here’s more info on the Beighton test: http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

  4. Rosa Says:

    I spent 8 years as a medical/dental librarian, and was only asked about this once, so I think “raising awareness” is a very good thing.

  5. Laili Says:

    enlarged version of the Beighton Test: https://s-media-cache-ak0.pinimg.com/736x/8c/9a/39/8c9a3994123baa764d9d1fed2cc85a1f.jpg

  6. Sunflower Says:

    Are you not posting anymore? This makes me sad :/

  7. Sarah Says:

    I have hardly been posting at all since taking my current job as a library director (4+ years ago). What I do now all day every day is not stuff I can write about–unlike my previous largely tech positions where I could share tools, projects, situations, and challenges. It’s harder to do that when my job now is predominantly personnel, budget, politics, and facilities related. I am sad too 🙁

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