Monday, May 2, 2016

May is Ehlers Danlos Awareness Month!

Did you know that May is Ehlers Danlos Syndrome Awareness month?  Ehlers Danlos is considered a rare disease, but the truth is that it's not.  It's actually just rarely diagnosed.  A lot of people have never heard of it, and many doctors don't know much about it.
Ehlers Danlos Awareness Month

Ehlers Danlos Syndrome is a connective tissue disorder in which the collagen produced by the body is faulty.  Collagen is the glue that holds the entire body together and so, when it isn't working right, it affects every part of the body.  This results in loose, hypermobile joints that frequently dislocate, easy bruising and slow healing, chronic pain and fatigue, gastrointestinal problems, and much more.  A list of symptoms can be found here:,10.0.html 

Because Ehlers Danlos is so misunderstood and unknown, it's very important to raise awareness for it.  The more people know about it, the more understanding there is for those who suffer with it.  Ehlers Danlos is listed as a rare disease which means that it can be hard to get funding for it.  The more people that are diagnosed with it, the more research will be done.  If you've never heard of it and your doctor doesn't know much about it, it will be nearly impossible to get a diagnosis.  But if more people are educated on Ehlers Danlos, that scenario will become less common.  

In honor of Ehlers Danlos Syndrome Awareness month, I made shirts for me and my kids to wear.   They are also available in my Etsy shop.

Ehlers Danlos Awareness Pocket T-shirt
Women's Pocket Tee

Ehlers Danlos Awareness shirt or bodysuit
Child's Ehlers Danlos Awareness Onesie or Shirt

What are you doing to raise awareness for Ehlers Danlos this month? 

This post is linked up at
1. Mom's Small Victories 2. Marilyn's Treats 3. The Joy Chaser  4. Running with Spoons  5. Create With Joy 6. Missional Women 7. Coffee Shop Conversations 8. Susan B Mead 9. The Zippy Zebra


  1. Replies
    1. Thank you for sharing! Together, we can raise awareness for this awful disease!

  2. I never heard of Ehlers Danlos. Your t-shirts are really adorable!

  3. There are so many conditions these days and I have to admit I haven't heard of Ehlers Danlos. thank you for sharing and raising the awareness with us at Over the Moon.

  4. So important to raise awareness of EDS. So many go decades without diagnosis.
    My babbling about my EDS to anyone who will listen has helped a few people find the answer to their health issues so I know I annoy many but I keep doing it.
    I need to do a blog post on EDS but struggle with wording it.

    1. If I can help one person get a diagnosis by sharing my story, it's worth it! Thank you for your comment!!

  5. I will be posting on Facebook, making a dance to capture my journey, changing my email signature, and sharing on Instagram/Pinterest.


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