A personal account of an EDS journey

This is Russell David Lewis’ story about his journey with EDS Hypermobility Type.  He has had many challenges along the way, but now is in a better place due to his eventual diagnosis.

“By: EDSHTDavid
Written on October 3rd, 2012
My name is Russell David Lewis. I have Ehlers Danlos Syndrome – Hypermobility Type (formally Type 3). Since I was little, I every single joint in my entire body dislocated. This caused pain throughout my childhood but was ignored by parents, family, school, and peers. They told me to shake it off and everyone has pains like that. This was not true, as I found out later in life.
I never thought as my joint issues being joint dislocations. Everyone told me I could hyperextend my joints, or double jointed. My classmates were the first to notice; not myself, not my family, and not my teachers. I would stretch and my elbows would hyperextend, allowing my forearm to drop lover, as if my arm was broken. Next, my schoolmates on my bus in high school noticed when I leaned, my elbows would twist and again looked as if broken.
My elbow can do a 180-degree twist. Later in high school, I tried out for the talent show. I counted over 70 things I could do with my joints. Now I know, there’s more than 300 joints in the human body. All of which, if not most, can dislocate within my body; I wasn’t even close. Even my ribs dislocate randomly. Alternatively, my hip will dislocate. That happened on a ride and they wouldn’t allow me to get up to relocate my hip! If you’re thinking that hurt, you’re more than right… for months!
My senior year of high school, I started a full time job ushering at a movie theater. I had to constantly keep moving, and I noticed I couldn’t do what most of my co-workers did. Meanwhile, I took weight lifting and I noticed the same with my classmates. My only choices were weight lifting, Agriculture, or ROTC. Still, I pushed through the pain and dislocations, naively.
When I look back, no one in my shoes would have gone half as far as these endeavors. I worked a full eight months and finished the weightlifting class. I went even further. I got curious about my disorder and started researching while still in high school. My parents would not pay for any doctor visits because they called me a hypochondriac behind my back; it is not their fault.
I found out about Ehlers Danlos Syndrome. No one believed me, not until a cat scratched my eye… Came that close to blinding me. I kept the cat and asked the eye doctor at a main hospital in NC about Ehlers Danlos Syndrome. I showed him my fingers hyper-extending and dislocating, my elbow twisting, and elastic skin. He was the first to agree.
A Geneticist saw me and diagnosed me with unspecified genetic disorder. They couldn’t distinguish between Marfan’s syndrome and Ehlers Danlos Syndrome. They never warned me of the impact of joint dislocations, nor noticed these joint dislocations; it’s not their fault, it’s a rare disorder.”
EDS is not as rare as originally thought and more are learning about this disorder daily. “1 in 10 Americans have hypermobility connective tissue disorders,” according to EDS expert, Dr. Fraser Henderson. That’s 30 million people – of which an unknown percentage  have EDS, specifically. Spread the word!
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