The month of May marks Lupus Awareness Month in the United States. For many other countries around the globe, October marks Lupus Awareness Month. In order to bring together a variety of awareness programs, World Lupus Day was started in 2004 to coincide with the 7th International Congress on Systemic Lupus Erythematosus (SLE) and Related Conditions. Today is the day that marks World Lupus Day.
Many people have heard the word lupus. However, most people have no idea what lupus is, outside of a word tossed around on a familiar television series. I’ve lived with lupus for just over two decades now, and I’m still trying to wrap my brain around some of its mysteries.
When people ask me, “What is lupus?”, I have found that the easiest, even if oversimplified, explanation is as follows:
Lupus is an autoimmune disorder where the immune system thinks that every thing in your body is something to be destroyed. People with lupus have an overactive immune system. Think of it sort of like rheumatoid arthritis, but instead of the immune system attacking the joints and connective tissue surrounding the joints, causing inflammation, lupus attacks every system of the body. These attacks happen without warning. One day, you can feel as normal as one does with lupus, and the next day, you can literally be fighting for you life when the immune system decides that your kidneys — as an example — are bad. The most common organ lupus attacks is the skin, as it is the biggest organ, however, every single bodily function can be attacked. Ninety percent of lupus patients are female and lupus does not discriminate against age or ethnic background. No two lupus patients are the same. While most experience the same core symptoms, the secondary conditions are as varied as the individuals who have lupus. Because of this, and the fact it mimics a myriad of other diseases, lupus is called “the disease of a thousand faces,” and “the great mimicker.”
That is the most simplified response I’ve been able to come up.
Unfortunately, it doesn’t even begin to explain all that is lupus. My own experiences with this disease have been near fatal. At least once a year, I literally have to fight for my life. This disease is responsible for the need to have a hysterectomy at the age of 29. It is also responsible for a stroke at the age of 30, which led to having to relearn how to walk, talk, dress myself, and more. It is also responsible for the need to have weekly chemo therapy, and a whole pharmacy full of other medications. It has also been the source of many heartbreaking discussions with my children during the times we have to wait and see how well I’ll survive yet another lupus flare.
Still, this is only the surface. More than 5 million people worldwide struggle with the often debilitating health consequences of this disease. It is a potentially fatal autoimmune disease –one where the patient does not know how they will feel day-to-day — capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys, and brain.
I invite you to visit the Lupus Foundation of America website to find out more about this disease. I also invite you to download my free audiobook, with PDF, Tales Of A Lupus Butterfly, to find out how this disease has affected my life and the life of my children. Warning: The book contains some NSFW language and the book’s cover image may be NSFW.