Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!
But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.
Beautiful month. Terrible disease.
Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.
Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:
There is no cure.
- More than 1.5 million Americans have it.
- Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
- Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
- More than 90 percent of people with lupus are women.
- Women of color are 2-3 times more at risk for lupus than Caucasians.
- Lupus research is underfunded and poorly understood, despite the disease’s prevalence.
So what can be done about this disease which has no known cause, few medicines, and no cure?
To me, that answer is simple: Support lupus research.
Supporting lupus research is a win for everyone. Why?
- The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
- An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.
Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.
- Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
- Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
- Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).
Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.