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Thread: May is Ehlers-Danlos Syndrome Awareness Month

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    Default May is Ehlers-Danlos Syndrome Awareness Month

    May is EDS awareness month. Those of you that follow me closely know that I have Joint Hypermobility Disorder or Ehlers-Danlos Syndrome type III, so creating awareness is important to me. Ehlers-Danlos Syndrome is the name of a connective tissue disorder. If you watch TV, you may remember it from this episode of House MD. To put it simply, EDS causes all sorts of health complications. I'm incredibly flexible, but not really in a fun sort of way. More in a doing-yoga-is-very-bad-for-me kind of way. Because of my freakish flexibility, I suffer chronic joint pain. I've lived with this pain since I was about 8 years old. It gets increasingly severe as I age. EDS has caused me to have "soft" fracture-prone bones, Restless Leg Syndrome, scoliosis, flat feet, loose joints, early onset osteoarthritis, bone spurs, dysautonomia, myalgia, abnormal wound healing, and it's caused several other health complications. Fibromyalgia, PTSD, depression, bipolar disorder, periodontitis, and Postural Orthostatic Tachychardia Syndrome (I have this one, too) have all been tied to EDS. Because of EDS, I'm prone to chest and sinus infections. In other words, I'm sick a lot.


    I was born with the disorder and I wasn't diagnosed until I was 23. It is an autosomal dominant genetic disorder found in 1 of every 10-15,000 people. There are several different types ranging in severity of symptoms. Luckily, I have the most common and least severe version.


    Unfortunately, there is a much more serious version of EDS- type 4. The people that have this type suffer from organ rupture, premature labor, and serious heart complications, including mitral valve prolapse. The people affected by this type have a life expectancy of 40 years.


    If you're curious about Ehlers-Danlos, you can check out the National Library of Medicine'sarticle about it. If you're looking for a new charity, the Ehlers-Danlos National Foundation accepts donations. I've written a blog about Stripping with EDS on my blog. If you've got EDS, I have found this blog to be quite helpful in choosing what supplements to take.


    Thanks for reading!

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    Default Re: May is Ehlers-Danlos Syndrome Awareness Month

    This is a great post. I have a close friend with EDS and I know how much it can affect your life.

    I also have POTS myself and it can be pretty debilitating. Do you take any medication for the POTS? Since I started fludrocortisone things have been much better.

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    Default Re: May is Ehlers-Danlos Syndrome Awareness Month

    great post we need more awareness
    don't hate the player hate the game......

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