Join The Ehlers-Danlos Society in celebrating May as Ehlers-Danlos Syndrome Disorder Awareness Month. 

My name is Avery MacGregor and I am sixteen years old. I was diagnosed with Ehlers Danlos Syndrome this past August after two years of trying to figure out what was going on. EDS is a rare genetic mutation affecting the connective tissues of your body. You can learn more about Ehlers Danlos Syndrome on the Ehlers Danlos Society Website. 

After going through the journey of diagnosing my EDS, it really became clear that there wasn’t a lot of knowledge out there about this disorder. Many of my doctors hadn’t ever heard of it or felt comfortable advising me on how to manage this. I am very lucky to be able to get a diagnosis. The majority of Ehlers Danlos patients will never get diagnosed because of the lack of awareness and information. 

As I learn how to manage this disorder it has been a goal of mine to spread awareness about Ehlers Danlos to my friends and family. My hope is that spreading awareness will make other Ehlers Danlos patients feel more supported, heard, and understood. 

The Ehlers Danlos Society does an amazing job creating information for patients and spreading awareness. In honor of Ehlers Danlos Syndrome Awareness Month in May, please consider sharing or donating to the EDS Society so they can continue to advocate and give help to those affected by EDS. 

Thank you so much, Avery