I’ve learned so much from connecting with others in the community

Posted February 14, 2020

At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). 

After listening to my entire history of being a dancer as a child, always extremely flexible, and having clumsy accidents like twisting ankles and subluxing knees, the diagnosis made so much sense! Unfortunately, I was only told that it meant that my joints hyperextended whenever I moved. I was not given any sort of treatment plan and I never saw this doctor again. 

A few years later we moved to another state. I continued to have body pain but began to have other issues as well. Migraines, cognitive issues, heart rate problems, GI problems, fatigue, and eye issues. I had also had a few surgeries. My body’s pain and level of functioning continued to deteriorate.

I continued to go to specialists for all of my issues but none of my doctors were seeing a connection. I always disclose that I have a diagnosis of hEDS. I have been so disappointed that most of my doctors have never even heard of EDS. The few that have heard of it don’t know much about it. Because of the lack of knowledge of EDS, I have been diagnosed with conditions that I don’t have. 

In October, I joined a local EDS support group and also got more involved with the Ehlers-Danlos Society. Because of these two groups I have learned so much more about my own disorders – hEDS and Postural orthostatic tachycardia syndrome (PoTs) – and am learning to better advocate for myself and build my team of doctors. 

My hope is that in the future, our medical professionals can recognize and help facilitate a diagnosis of EDS so that patients aren’t suffering for so long.

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