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May is Ehlers-Danlos Syndrome Awareness Month.  And, as I’ve done in the past, I am using my blog as a place to help raise awareness about this genetic condition.  Why?  Because, lucky girl that I am, have Ehlers-Danlos Syndrome.

You can read my posts from past years (2009 & 2011) for a lot of detail on what the disorder is, how it has affected my life over time, etc.  But in short, Ehlers-Danlos Syndrome is a connective tissue disorder.  EDS causes your body to make jacked up faulty collagen.  And since a lot of your body is made up of collagen (especially tendons, ligaments, skin, internal organs) this is a bad thing.  My primary symptoms are chronic pain in all joints and dislocations in many joints.  There is no cure for EDS and since it is relatively rare there isn’t a lot of financial motivation for companies to research it.  All you can do is manage the symptoms.

I still wake up in pain every morning, hurt all day long, and hurt all night as I toss and turn trying to sleep.  But it’s become a part of me…the pain.  One gets used to it after a fashion, as sad as that may seem.  I don’t think about it as much anymore and it isn’t all-consuming as it used to be.

The biggest change since last year is that I am now successfully off of all pain medications.  None, zero, zip.  This is a *big deal*.  I had been on numerous medications for several years and I swear that they were more harmful than helpful to my body.  I take the occasional ibuprofen now, but that’s it.  I’ve continued a strict regimen of physical therapy and exercise and that is helping a lot.  I also strongly feel that my whole foods, mostly organic, vegan diet has had a lot to do with helping my body do better within its limitations.

So for some happy news, here are three things that I couldn’t do last year because of the EDS symptoms, but now can do:

  • I can now wear high heels without pain (yay for sexy shoes)
  • I can hike on rough terrain without dislocating ankles and knees
  • I can go dancing until the wee hours of the morning with no ill effects (to my joints anyway <insert snark here>)

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

“May is Ehlers-Danlos Syndrome Awareness Month”

  1. Mary Beth Sancomb-Moran Says:

    Bravo on ending your meds! I’m afraid to do so, myself, though I have a completely different issue. (Fibromyalgia, with some advanced osteoarthritis thrown in for fun.) One thing I have started, though, is tumeric. After a month, I’m really noticing a difference.

    One of the advantages of working at an institute of higher ed is access to profs in various areas – like chemistry. Our chemistry prof explained that tumeric is a natural anti-inflammatory, and works best (and this is key) when paired with black pepper. I’ve been taking a capsule form of the two. ( I like tumeric, but not to the point of putting it on my oatmeal.)

    Thanks for sharing your experiences, Sarah!

  2. Edi Says:

    What an informative visit to your blog today! I’m so glad you have good news to report!
    Tumeric and black pepper? Who woulda thunk?!

  3. Ckubala Says:

    Thank you for sharing your experiences Sarah! It is a testimate to your passion to your profession that you can accomplish so much in spite of personal maladies. I had never heard of Ehlers-Danlos Syndrome so the this blog post is informative and educational.

    Are you going to share a picture kicking up those heels?

  4. todd Says:

    Hi Sarah. Another EDSer living in the Bay. Appreciate your awareness. Keep spreading the word.

    Congrats on getting off chronic use of pain meds. I noticed someone posted about Curcumin/Tumeric. I too am a big fan.

    Take it easy and I wish you good health.

  5. J0 Johnson Says:

    My daughter has EDS. The first dislocations (that we are aware of) happened when she was three years old. She was diagnosed in 2005 at age 28 when she was unable to keep her arms in the shoulder joints. She is one of the unluckly ones. She had to stop working in 2005 and has not been able to drive for the last five years. She had knee surgery when she was 16, but no one realized the whole picture. She has dislocations in both large and small joints including ribs. As this is a connective tissue disorder, she has dealt with heart problems including racing heart beats and extremely low blood pressure. Would like to find resources for her. We have been unable to find a specialist, though she has been seen at University of Texas Southwestern Medical Center in Dallas..

  6. Sarah Houghton (Librarian in Black) Says:

    Jo: I wish you and your daughter luck. I recommend starting with this resource list built by the amazing librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources: http://ricklibrarian.blogspot.com/2009/06/ehlers-danlos-syndrome-reference.html

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  8. Eric Says:

    Yay for reducing your symptoms with a vegan diet!

    I saw you speak at last year’s Internet Librarian and I wish I had taken the time to come up and say hello. I enjoyed your presentation, and especially your attitude. I liked your cards and swag as well. I was happy to see another “librarian in black’ as there aren’t enough of us :)

    I gave my first ever seminar at that conference, and needless to say, I was a bit nervous. Mainly because I felt like I didn’t fit in too well, and I definitely don’t fit the appearance of the stereotypical librarian (if there is such a thing these days). Seeing your presentation calmed my nerves quite a bit, and boosted my confidence to see someone else who doesn’t quite fit the mold up on stage.

    Best wishes to you as library director as well, it sounds like a great but challenging position.

  9. Sarah Says:

    Wow, Eric. Thanks! I’m so glad to hear that I somehow made you feel better about presenting. There’s absolutely nothing wrong with not fitting the librarian stereotype. In fact, I think that’s half the reason people like me ;) I have also now subscribed to your blog, which has an AWESOME name btw.

  10. Tori Says:

    Thank you so much. I was just diagnosed with EDS. You give me hope. This has been a mystery for many many years. Since I was born. With all the surgeries fixing joints now everything is getting fixed.

  11. Mary Says:

    Sarah,I think it’s great that you’ve been able to reduce your problems with diet chance. However I do believe it is strictly a case by case thing and not everyone is going to be healed. My daughter has POTS,EDS,AV Fistula and possible chiari so she’s got alot going on. She’s in severe pain most of the time. We both have POTS and EDS and what works for me doesn’t always work for hre and vice versa. Especiaily where pain is concerned. She dislocates ALL the time and some of us hardly ever. So we can’t bunch ourselevs into the same one size fits all category of what’s going to work…unfortunately. I wish it were that simple.

    I’m really happy for you and I hope you have continued success with what you are doing.

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