• maryelise555

the perils of having a rare disease

Updated: Mar 5

I often struggle with trying to explain my illness and what it is exactly. I find myself wishing I had a more recognizable malady, like cancer or ALS or Parkinson's. Don't get me wrong - I am not in any way minimizing these horrible illnesses, and would not wish them on anyone.

Still, it would be nice if MSA wasn't often confused with MS. It is so regularly confused with MS, that on ID bracelets it is advised that you spell the whole thing out, in case people mistake the two. It also affects speech and walking, so a bracelet is advisable so people don't think you've been drinking. Not to mention the erratic laughter. I imagine that if I lived in olden times, I might be committed to a hospital.

I don't blame anyone for not knowing about MSA. Four in 100,000 get it. It's rare. In her 20 years of practice, my speech therapist has only come across it one other time. Many doctors have never heard of it. It doesn't populate as an option in autotext. I've written up a standard answer to the question, "what is it?" to save time explaining.

"I have cancer."


"I have Parkinson's."


"I have MSA."

"Oh, MS?"

"No, MSA."

"What's that?"

"It's like a cross between Parkinson's and ALS."


Part of the confusion stems from the fact that MSA has many qualities of late stage Parkinson's, so I can sympathize with people when they are confused. I don't blame them, it confuses me, too.

I just wish it was a more "popular" disease because then more attention would be paid to it and maybe there would be more research done. There's some now so that's hopeful, but MSA is still so rare that it hasn't hit the mainstream-disease-category yet.

Let me just reiterate, cancer and Parkinson's and ALS and MS are horrible, terrible diseases and I hope that they discover cures for these. I can only imagine how awful it must be for people who have to live with any of these. I am not trying to rank or measure being sick. I am not comparing one to the other and saying that one is better than the other. Certainly, all illnesses are difficult.

I will just say that having a rare disease is tricky, and no, I'm not drunk - although sometimes I wish I were.

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