What do you advise someone who has symptoms of scleroderma?
Jerry: Try to connect to a person who knows the disease. Since it's rare, the biggest problem is that it's misdiagnosed. Doctors don't want to admit they don't know, so do some research on the Internet and find out where they're doing something. The best places are Johns Hopkins and the University of Pittsburgh.

Is there anything you would do differently?
Jerry: I didn't act fast enough, so for months we didn't know what was wrong. I asked my doctor where he'd send his mother [if she had these symptoms] and he sent us to a local rheumatologist who immediately said it was scleroderma. But we didn't listen.
Judy: That's because I didn't want to believe it. But if we'd gotten to the right doctors immediately, maybe I'd be in better shape.

What was the most helpful advice you were ever given?
Jerry: Actually, it was when we were in our forties. A friend urged us to take out long-term healthcare policies. That was the best advice because it covered the therapies Judy gets at home and helped before we got Medicare.

How can people show that they are genuine friends?
Judy: Call to see if there's anything you can do to help. Say, "Let's have dinner together." Stop by once in a while, even bring a meal. I can't drive anymore, so they could relieve Jerry by taking me to lunch or to the mall.
Jerry: It works two ways, because we go out of our way for that handful [of friends] who extend whatever.

What are the most important qualities in a caregiver?
Jerry: Compassion. Patience. And trying to understand what that other person is feeling.