The last 5 years have aged me. You can now see it in my face. Many Ehlers-Danlos patients look way younger than their years and I was no exception. At 64 I could have passed for 55 easily. I have proof – a studio portrait taken for a book blurb in December of 2015. A few years later I had undergone five surgeries in 18 months and thought the death-dying deeds might be the cause of the dramatic change.
So many things popped up. I had never had joint issues and suddenly I had joint pain, mainly wrists. I wondered if these were subluxations as the pain happened with “normal” use of my hypermobile joints. I started craving salt and eventually began wondering if I had POTs but I was doubtful I did with no lightheadedness ever. My brain fog increased. My memory, recent and long term, diminished. I started having numbing, tingling and muscle spasms. I could no longer walk straight down a hall in a building.
I had to consider that all this uptick was aging with Ehlers-Danlos – that things can and were progressing. In the middle of this my genetic testing only turned up one connective tissue mutation – on a gene that caused conditions I didn’t have. I thought, “Okay, I’m not normal; not EDS normal.” And again, “Is this EDS aging with an unknown EDS variety?”
When I finally started getting to the roots of my uptick in GI problems, I started realizing that I had normal comorbidities; first was Mast Cell Activation Syndrome. I was able to get an official diagnosis and medicine. Life improved, brain fog improved, ability to eat improved, joint issues nearly disappeared. But the other problems remained.
I was sent for autonomic testing. I gained some words that described an abnormal body. Surprise! I’ve been heat intolerant for decades and I no longer sweat. Whatevah!
It was that doctor, the neurologist who performed the test, who suggested an autoimmune disease. He noted drooping eyes. He gave me words to describe what might be going on. I’m not all the way to an official diagnosis yet but it appears to be Myasthenia Gravis, a rare neuromuscular disease, the cause of my drooping, not aging, face and eyes. At the same time he informed me that the prevalence of autoimmune diseases is high in the EDS community.
In other words, aging with Ehlers-Danlos is the same as many younger people experience: diagnoses, accumulating conditions and complicating health care solutions. What is different has not been the doctors assuming my problems were aging. It was my thinking that it was aging. It was my inability to look past the aging, drooping face in the mirror. I was actually Ehlers-Danlos “normal”, just a lot older.