Q: Will it get worse?

Q: Will it get worse?

A: Yes. HSP is a degenerative disease. I have had it all my life. I can recognize very mild symptoms of it as far back as when I was six years old. Every decade it got worse. It has been getting worse my whole life. In the past 3 years, the pace has greatly quickened, and I’ve gotten much worse, much more quickly. This is common with my disease around my age.

The hope is that the pace will slow down again, and my degeneration will be very slow now throughout the rest of my life. There will be a point sometime in the future when I will not even be able to stand for a few seconds like I can now. There will come a time when I will need to use a power wheelchair part of the time because my torso will become more and more affected. So, it will get worse, but it will happen very slowly, and I will adjust to it, like I’ve been doing all of my life.