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 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: http://invisibleillnessforum.com/index.php/topic,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.
Women's Pocket Tee |
Child's Ehlers Danlos Awareness Onesie or Shirt |
What are you doing to raise awareness for Ehlers Danlos this month?
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I am posting on Facebook.
ReplyDeleteThank you for sharing! Together, we can raise awareness for this awful disease!
DeleteI never heard of Ehlers Danlos. Your t-shirts are really adorable!
ReplyDeleteThen my awareness post is working! Thank you!!
DeleteThere 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.
ReplyDeleteThank you for stopping by!
DeleteSo important to raise awareness of EDS. So many go decades without diagnosis.
ReplyDeleteMy 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.
If I can help one person get a diagnosis by sharing my story, it's worth it! Thank you for your comment!!
DeleteI will be posting on Facebook, making a dance to capture my journey, changing my email signature, and sharing on Instagram/Pinterest.
ReplyDeleteAwesome! Thank you for helping to raise awareness!
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