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A silent struggle

Updated: Jul 30, 2021

You may not know that I was born with my hips dislocated, and was in a brace for first few months of life…which now allows me to walk normally as an adult. As I grew, I was plagued with crowded teeth and a small palate, undergoing a multitude of extractions, braces, and orthodontic work for what seemed like a lifetime. I was perpetually clumsy, falling often, injuring myself…even tripping in kindergarten and snapping my collarbone in half. I complained of stomach pains and fatigue, often being told I was faking my way out of sports practices or class. To most, each of these events seemed relatively unrelated at the time, and just the result of bad luck.

It wasn’t until 5th grade, when a school nurse diagnosed me with scoliosis, that the pieces began to fall together. When I was referred to an orthopedic surgeon to monitor my condition – he realized there was a more systemic problem that may have been the cause of my scoliosis in the first place. He suspected that I may have Ehlers Danlos Syndrome, and after meeting with a geneticist, he was absolutely right.

The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” – Ehlers Danlos Society

The biggest thing I've learned about EDS: When you can’t connect the issues…think connective tissues.

I feel lucky that a keen doctor identified my condition so early in life. Many patients endure decades of misdiagnoses and confusion before learning that they are afflicted with EDS.

Although my joints are hypermobile, my skin will bruise and scar easily, and I am highly prone to injury and subluxation…I’ve done my best to keep EDS from limiting me. The hardest time to do that was during high school sports. Track and Field nearly ruined my legs. Nearly every day after practice my legs were packed with ice, and I would endure excruciating pains in my shins, knees and hips to participate in the sport I loved. My legs have never fully recovered, and although I’ll probably never run again, I feel lucky that I didn’t endure greater, more permanent damage as a young athlete. And frankly, I can do nearly everything else…and now have a greater appreciation for what my body CAN do rather than what it can’t. For now, I work to prevent injuries, and protect what my body is capable of today.

May is Ehlers Danlos Syndrome Awareness Month, and I’m sharing #MyEDSStory to shed light on the reality of invisible, chronic diseases. Just because someone doesn’t look “sick” doesn’t mean that they too are not dealing with silent struggles. To celebrate this month, I’m asking you to consider donating to organizations who are actively doing or funding EDS research:

I’d like you to consider making a donation to The Norris Lab at MUSC. The Norris lab (@NorrisLab) has a research focus on genetics, causes and therapies of hypermobile Ehlers Danlos syndrome (hEDS). A passion for the disease stems from researchers in our group who have hEDS and are committed to making life better for themselves, their families and those many others who are affected. Exciting new discoveries on patient genetics, animal models to study hEDS and generation of a platform to test therapies are forthcoming. Acceleration of impactful clinical and scientific discoveries is only possibly through additional funding. Make you donation here and select "EDS research in Regenerative Medicine”.

You can also make a donation to: The Ehlers Danlos Society - Donations to The Ehlers-Danlos Society are critical to our continued ability to raise awareness and visibility of EDS and HSD among the general public.

To my fellow EDS warriors, I challenge you to share your EDS Story! Stay strong Zebras!

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