Rare Disease Day

Logo of RAREDISEASEDAY.ORG, with three colored hands radiating out with a white stick figure at their base

I see that it is Rare Disease Day again. I find that I posted something about it and my “rare disease” two years ago. What I wrote then stands up pretty well, so I’ll just go ahead and link it:

Rare Disease Day (Better Late Than Never)
Andrew Pulrang, Disability Thinking - March 1, 2014

At the end of that post I said I would read the Wikipedia page on arthrogryposis, in case there was something new for me to learn there. As it happens, I did learn a few things:

- Arthrogryposis is a more varied condition than I thought. I recognized many of the listed symptoms, but others were things I have never experienced.

- The article says that arthrogryposis may be genetic, and then says that, “The exact causes of arthrogryposis are unknown yet.” Somewhere around the mid-‘80s I was told, without much hint of doubt, that it was genetic. I don’t know whether the article is wrong or my information is out of date. The answer doesn’t make much difference to me, but I might do some further digging to find out.

- The article talks about some improvement in muscles and contractures being somewhat common as a person with arthrogryposis ages. That is certainly what happened with me, up to a point. And while I had a LOT of surgery that contributed to my mobility now, I also had the feeling back around my late teens that my feet, legs, arms, and hands didn’t really need therapy anymore to maintain their usefulness. Everyday activity seemed enough. I guess that matches up with these broader conclusions.

- There is almost nothing in the Wikipedia article about arthrogryposis and aging, which would actually be useful information at this point. That’s another thing to do some more digging for.

I am still not all that interested in arthrogryposis, but i feel like I am well past the point where not being interested is some kind of weird psychological hangup or point of pride. So that’s good, probably.