May is Lupus Awareness Month, and during this time, I’ll be blogging frequently about aspects of the disease, living with it, and coping with it. I realize my personal experience is unique; each person with lupus has his or her own particular set of symptoms, manifestations, and treatment protocols, as well as attitudes and coping mechanisms. So, I’m by not means the definitive “voice of lupus.” But, I have lived with the disease since my diagnosis nearly 16 years ago, and probably had it in various stages for most of my life. So, I at least have some experience with it and with the many issues that accompany life with lupus. Moreover, I’ve always been a person of faith, and have brought that aspect of my being fully into my journey with lupus and all the other chronic illnesses I have. As you can imagine, I have strong opinions on this part of the lupus puzzle, too!
But, in this post, I want to start at the beginning: Why “Lupus Awareness Month?” Or, rather, why one more disease-centered awareness campaign for an illness that isn’t very common and doesn’t appear to be that serious because other disease get much more press.
I just took a deep breath. Lupus Awareness Month is important for many reasons, and not just because I suffer from it and know other people who do, too. Although the media might not cover lupus all that much (I have my opinions on why this is, and I’ll write about those later on), lupus is NOT rare, and it is certainly a serious illness. Estimates are that between 1-3 million people in the United States and more than 5 million worldwide have lupus, and as physicians become more aware of the disease and how to diagnose it, that number will undoubtedly grow.
Despite the numbers (more people have lupus than have many other disease, including multiple sclerosis, for example), there is no cure for lupus and we’ve only had one new drug to treat the disease in the past 50 years. Research has only ramped up in the past few years, possibly (my opinion) because most of the people with lupus are women diagnosed in their childbearing years. Throughout the history of medical research until fairly recently, investigation into diseases primarily affecting women has been frightfully behind that of diseases that affect men.
Living with lupus is a tremendous challenge for many of us “lupies,” and I’ll try to give an idea of what it’s like during this month in my blog. I’ve also prepared a Gallery, “12 Answers to Questions about Lupus,” which is available on Beliefnet, and can give you a good overview.
Blessings for the day,