I read with interest the newspaper’s story about Elisha Morgan, the woman with Ehlers Danlos Syndrome who chose to have her foot amputated.

I fully support her decision; it’s her body and she can do as she wishes.

However, I don’t believe that the story accurately portrayed EDS. I say that because I have EDS.

EDS is a connective tissue disorder. It’s a genetic mutation that makes the skin stretchy and the joints unstable. Joints dislocate easily and muscles have to work extremely hard to keep the bones in place. It’s very painful.

A sneeze can dislocate a shoulder. Rolling over in bed can dislocate a rib or a hip. Repetition increases the pain so that walking hurts. Making dinner hurts. Folding laundry hurts. Sitting hurts. Because it’s genetic, a person who has it can’t exercise the disorder away. Pain control is extremely difficult.

What I most want readers to know is that amputating a body part will not fix EDS. That’s because it doesn’t affect just one joint. It affects the entire body. I feel for Elisha, but from what was described in the paper, it doesn’t sound like EDS. She deserves an accurate diagnosis. It could save her other foot.

Lisa Bondeson


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