May is National Ehlers-Danlos Syndrome Awareness Month

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the individual. Ehlers-Danlos Syndrome is classified as a rare disorder affecting 1:5000 people.  However, based upon recent research, the prevalence of EDS exceeds this number and could be as high as 1:100 to 1:200 people (Collins, 2015; Nielsen, 2013), or even higher. The variety of symptoms and presentations proves challenging to the medical community in diagnosing and treating patients; many of whom are misdiagnosed and suffer as a result.

Each type of EDS is characterized by a distinct problem in making or using one of the types of collagen. Collagen is the body’s most abundant protein and can be found in nearly every component of our bodies, from our ears, to our eyes and mouth, to our heart, surrounding our internal organs and veins, connecting our joints, in our bones and down to the tips of our toes. Collagen is a strong protein that provides both strength and elasticity to our tissues, as well as allows our tissues to be stretched safely without damage or without being stretched past a normal range. Basically, Ehlers-Danlos syndromes are structural problems caused by defects to the “glue” that holds our bodies together.

A perfect example is described on the website for the EDS 2016 International Symposium. 

“If one builds a house with bad materials, perhaps half the necessary wood or aluminum nails, one knows there will be problems. Some problems can be anticipated, but because those materials were used everywhere and aren’t necessarily visible, one may be surprised. Being built out of a protein that doesn’t behave the way it should can result in widespread difficulties in a wide range of severities, even in places one wouldn’t think are connected until one realizes that collagen is used there, too.”

For the reasons stated above, Ehlers-Danlos Syndrome is viewed as a multi-systemic condition that presents differently in those affected. To learn more about Ehlers-Danlos Syndrome, go here.  Additionally, to learn about signs and symptoms of EDS, go here and to read about how EDS is diagnosed, go here .  An updated list of all recognized types of Ehlers-Danlos Syndrome, can be viewed here.

In celebration of National EDS awareness month, I have 3 main objectives:

1. Celebrate the release of Our SOS Media, LLC’s debut anthology Our Stories of Strength – Living with Ehlers-Danlos Syndrome.

  • To learn more about this debut anthology, please visit the Our Stories of Strength website.
  • To place a pre-order for Our Stories of Strength – Living with Ehlers-Danlos Syndrome, click here. Digital books will be available to download on May 8th.
  • To read about upcoming anthology titles & submission due dates, please go here.
  • To read about Our Stories of Strength – Living with Ehlers-Danlos Syndrome in EDNF’s Loose Connections Spring 2015, please click here.

2. Participate in the #Just5Minutes EDS challenge & the #MayIBeginYoga2015 yoga challenge on IG. The “Just 5 Minutes” challenge is based upon the rule that I use for myself when I need motivation to get moving and I really do not want to.  I also wanted to do this challenge to help show that we can all find something to do to help stay active and keep our bodies strong, even if it’s for Just 5 Minutes.  If you are lying in bed or sitting in a chair, there are many ways you can push yourself to move a little more than usual, but safely.  Muscle strength is so important when you have EDS, because your muscles end-up picking up the slack for the weaknesses in our connective tissues.  The stronger your muscles, the better they do holding our bodies together and the less pain and other issues arise from muscle weakness.  Challenges are great ways to push ourselves outside of our comfort zones and find out just how strong we really are. We really are much stronger together.

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3. Host the 2nd Annual #EDSRideForACause on May 30th at Zengo Cycle in Bethesda, Maryland.  Last year’s EDS RideForACause was so much fun and my goal is to fill-up 2 classes this year.  There’s so much still to do, but this event will definitely be a fantastic way to wrap-up EDS awareness month, the release of Our Stories of Strength – Living with Ehlers-Danlos Syndrome and finish the #Just5Minutes and the #MayIBeginYoga2015 challenges. To sign-up for the 2nd Annual #EDSRideForACause, please visit Zengo Cycle’s website. Space is limited, so please grab your bike soon!

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Additional information and details on the 2nd Annual #EDSRideForACause and the release of Our Stories of Strength – Living with Ehlers-Danlos Syndrome, will be posted here, on our Facebook pages and on other social media platforms.  Please check back for updates!

Additional EDS Awareness Month information & events:

**Below list will be updated daily, so please check back often.**

EDNF’s Loose Connections Newsletters (past and present)

EDNF’s Resources Guides

EDNF’s #EhlersDanlosStories video contest:

How to Participate:

1. Create a video that shares part of your EDS story with the world.
2. Upload your video to YouTube with the hashtag #EhlersDanlosStories in the description.
3. To officially enter the contest, paste the YouTube link of your video to EDNF’s Facebook page.

The Rules:

1. The contest runs from May 1st through May 31st at midnight.
2. The video with the most views on YouTube wins a complimentary registration to the 2015 EDNF Learning Conference in Baltimore, August 13-15.
3. EDNF Staff will select a “Staff Favorite” video which will also win a complimentary registration to the 2015 EDNF Learning Conference.
4. Videos must be one minute or shorter, and appropriate for family viewing.
5. You may enter the contest at any time during the month of May.
6. Have fun and spread awareness!

– Join Annabelle’s Challenge Foundation  & EDS Awareness Ireland by wearing red on Thursday, May 21nd & posting a pic in support of #VEDS research. When posting and sharing on social media, please use hashtag: #reds4veds.

– 1st Annual Ehlers-Danlos Zebrathon Bash – Saturday May 30th, 2015 in Erie, PA. 11185871_903607329698833_2056460251_n

– More to come!