Disability advocate talks about rare disease, Ehlers Danlos Awareness Month

{Photo Credit: Pamela Kelly (left) and council member John Burke {right)/City of Lexington}

I spent a good chunk of my teens on crutches. I got a tendon graft on my ankle at 19. I had weird allergies that sent me to the ER over and over. Dizzy spells and heat intolerance for most of my life. One of my doctors described my erratic heart rate to always being on a roller coaster.

It’s kinda fun to “trick” my smart watch which alerts that I hit my target zone washing dishes. All of our lives we have been telling our medical providers, family, employers that these symptoms were all connected only to be met with blank stares. “Your labs look fine!”

They have a saying in medicine that when you hear hoofbeats you think horses not zebras. Since around 2017 we have a new saying, “When you can’t connect the issues, think connective tissues!” Ehlers Danlos Syndrome is a group of 13 heritable conditions affecting connective tissues. Once considered rare, we now know that it is rarely diagnosed. My type is the most common. HSD/hEDS occurs in 1 in 3 to 5 thousand. We rely on recent developments in diagnostic criteria and research to help us with earlier diagnosis and treatment. Recent cuts to research funding will impact the lives of people with EDS and many other conditions that we are just beginning to understand.

I’m am grateful for Mayor Hayes and the City of Lexington for this proclamation and the opportunity to raise awareness. May is Ehlers Danlos Awareness Month. I urge you to learn more about EDS by visiting Ehlers-Danlos.com

Pamela "Kelly" McAfee

President ~NCDP Disability issues Caucus