Lupus: Heather Kamins' Story Video

Lupus is a disease that affects many parts of the body. Learn more about Lupus and what it is like to live with the disease in this video.

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About this Author

Heather Kamins was diagnosed with Lupus in 1990.

HEATHER KAMINS: My name is Heather Kamins and I was diagnosed with lupus in 1990. Some of the first symptoms I had were joint pain, also a lot of fatigue. Those were really the main ones that I noticed at first. Those went from pretty mild to very severe over the course of about a month and a half, and that's when I finally was diagnosed. When I was first diagnosed, I was just relieved to know what it was and to know that it had a name so that we could start treating it. I think it wasn't really until a little bit later that it kind of hit me that this is a chronic illness and it's going to take some getting used to because it's not going away. But over time, I learned to accept it and manage the condition. The first treatment I had was prednisone at a pretty high dose. The good thing about it was that it made my symptoms go away literally within about 24 hours. My joints were back to normal. I felt a lot better. There were a lot of side effects, and those needed to be managed, too; things like high blood pressure and increased susceptibility to infection. And fortunately, my family was really there for me and I had some good friends who were there for me. Both of my parents came with me to a lot of my doctor's appointments. Another good source of support for me was the Lupus Foundation of America. There were some people I met through that who have had lupus for decades and were doing very well with it, so that was a real source of hope for me. Well, the most important thing is to find a good doctor who you trust and you can talk to and really feel comfortable asking questions off. The type of specialist you would want to see for lupus is a rheumatologist. They specialize in lupus and other related diseases. Another important thing is to educate yourself through either books or online articles, but you want to make sure that your references are up to date and that they are accurate, so one good place to look is through the Lupus Foundation of America. They have a lot of local chapters. Well, I've heard that the best way to live a long, healthy life is to get a chronic illness and just manage it really well, so there's a lot of hope. People have really good outcomes and they live long, happy, productive lives with lupus. And I'm happy to say that at this point I've become one of those people who have had it. I've had it for almost 20 years now, so I've been doing really well. I'm not on any medication for it at this point. And there's a really good future ahead if you take care of yourself.