I’ve done a lot of fundraising for different charities, but I’ve never ever had as hard of a time getting support than for the Lupus walk, and I’m guessing it’s because it’s not one of the diseases people really know about.
My fight against lupus has been a long time coming — I’ve been sick for about six years, but only diagnosed for about six months. But in those six months, I feel like most of my energy has to go into repeatedly explaining what lupus is. The amount that the general public knows about the autoimmune disease is pitiful. I’ve seen first-hand people’s ignorance about the disease, something that has been increasingly frustrating. It’s not like telling someone you have cancer – they know what that is and are eager to help.
People don’t know that lupus is incurable, debilitating and frequently deadly from complications. The average age of death from lupus complications is TOO YOUNG. It attacks your entire body and each day is a struggle. It makes simple colds last four weeks (and counting..) It takes pill upon pill every night to get through your day. It takes a mental battle to get out of bed. It sometimes takes chemo and cancer drugs to just make it bearable — but you’re NEVER going to be cured. It’s going to be with you until the end. And it’s likely going to cause the end.
Lupus is in deep, deep need of research funds, but it’s not known enough and it’s not getting a lot of support which means more people are being diagnosed too late, if at all, and it’s too late for them. Lupus needs massive awareness to help fuel the research that is so desperately needed. It affects more people than you know.
The walk is next weekend. If you’re interested, you can donate online, or you can join us.
The Syracuse Woman Magazine and Eagle Star-Review ran my explanation of the disease this month. You can read about that here.