Living with Multi-Generational Ehlers-Danlos Syndrome

Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the size of a tennis ball. His doctors were forced to drain his knee, but during the procedure they noticed the skin ripping in the telltale manner of an EDS patient. Since EDS is a connective tissue disease, it can cause fragile skin that tears easily. This was the first of countless injuries that Kenneth has experienced, collecting many scars along the way. In school he was relentlessly mocked and bullied for his appearance, being told to cover the cuts and scars on his skin. He developed extreme tolerance to pain, but struggled with social interactions that left him feeling like he would never be “normal.”

In this episode of the Major Pain podcast, Kenneth shares his story growing up with EDS and how it has shaped his life. As a child he felt like his doctor and family were the only people that understood him. His doctor was EDS literate, teaching him about the disease and helping to stitch him up during frequent injuries. But after this doctor retired, Kenneth found it extremely difficult to get medical care. Many doctors were unfamiliar with his disease, and assumed he was an addict seeking drugs. Kenneth eventually avoided going to the doctor as much as possible, learning to care for his own injuries and manage EDS by himself. As he got older he began to realize that yes, he was different, but he was going to make it. For much of his life there was nobody telling him things were going to be ok, and he hopes to be that voice for anyone struggling through EDS alone.

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