The last few months have been a slow whirlwind for me - leading me to stop writing for a while. I'm still in early period of diagnosis of the Myasthenia Gravis, a rare neuromuscular autoimmune disease. Since my flare in October, my body has changed dramatically and figuring out what to do next has been a crazy making period for me. At least the diagnosis is confirmed and my neuro is trying to get approval for the next step treatment for me - IVIG. He says it make take 3 months to get it approved so I'm in a waiting pattern for now.
It takes 6 years or more to get a diagnosis for rare conditions. I was 55 before my lifelong symptoms were identified as Ehlers-Danlos Syndrome, a genetic malady that causes defective collagen. The interesting part of this is the commonalities I've noted in the rare disease groups. The main one is the journey to diagnosis and how emotionally exhausting and damaging it is. I started researching rare disease alone and found a couple of studies that prove to be apropos.
I have read so many horror tales in the Ehlers Danlos community. I attribute this problem to several factors. We spend so much time seeking diagnosis from multiple specialities. So many of us have medical PTSD - we are so used to not being believed. We are so complicated and rarely present the same as others with EDS since there are so many varieties. We really are zebras! New varieties…
Believe Me, continued. Second Stage Disbelief. I almost died. I certainly had gotten used to being brushed off and ignored by my doctors: I was still hoping for diagnosis and for docs who believed me. Well, they believed me all right. I opted for an ostomy. An ostomy for constipation. Wow! And it was the hardest decision I've ever made.
Most everyone in the Ehlers-Danlos community has a story to tell about their medical PTSD. Watching the stories on the Facebook group for Myasthenia Gravis, I’ve realized it’s a rare disease phenomenon, not just us Zebras. If you’ve not experienced the kind of problems I’m talking about, count your self extremely fortunate.
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.
Twilight – that time between the clarity of day and the murky darkness of night. When I got diagnosed with Ehlers-Danlos Syndrome (EDS) at 55, I was told by the doc that it was untreatable and uncureable and to just go home and forget about it. Once so much came online about it, I was able to get further but except for odd surgeries, cysts and hernias, it all seem to just go along without massive problems.