I had my lightbulb moment at 50 years old

Posted March 10, 2020

I am 80 years old. I was diagnosed with hypermobile EDS at age 50.

I participated in an Arthritis Newsgroup (this was years before social media), and a Norwegian girl reported that she had just been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). She listed her symptoms and the lightbulb moment happened. She was talking about me!

In that instant my life made sense. I was so fortunate that through diligent research I discovered that the National Institutes of Health (NIH) was conducting connective tissue disorder consultations, I immediately called and made an appointment to be seen. Both Dr. McConnell and Dr. Francomano met with me. The result was that I was a classic presentation of hEDS.

Fast forward 35 years. I feel I am now a pioneer in hEDS aging. I know young and middle-agers with all types of EDS, but I haven’t found anyone older than I am. It’s hard to know what to expect. Some things have actually improved; arthritis has stiffened some of my loosest joints.

After 50 odd surgeries, half of my body is metal, and I set off alarms wherever I go. I’ve lost 7 inches in height, and I now shop in the petite department. My right leg still subluxes and requires the use of a cane. I fall often, but only backward and can’t get up. The local EMTs use my house as a way station. Once they even brought me a pizza.

I attend the Senior University of Greater Atlanta twice a week and will be teaching a course in the spring. My message to those of you heading my direction age-wise is that even though your physical body may be shot you can still live a decent life, have friends and have fun.

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