Like a lion hiding in the underbrush before it pounces on its spied prey, the symptoms and severity of lupus and other auotimmune diseases can sneak up you when you are least prepared for it. One day you may be feeling like your old self before the disease took root, super strong, active and as healthy as the next person. The next day you may literally collapse, a rash spreading across your skin, a respiratory infection settles in deep, and your neurological system can go haywire, causing you to sink into a severe relapse of disease.
How long will you be, like me now, be confined to the bed or couch? A couple days, a couple weeks, a couple months or much longer? The uncertainty of autoimmune disease, the limited or misinformed knowledge about its origin and manifestation, and the lack of a cure are important reasons why I do what I can to promote awareness. So today, I PUT ON PURPLE for lupus.
Five Important Facts about Lupus
- An estimated 1.5 million Americans, and at least five million people around the world, have a form of lupus.*
- Lupus is a type of autoimmune disease, in which antibodies made by the immune system erroneously begin to attack one’s own healthy tissues as if they were foreign invaders threatening the body. Lupus specifically may attack joints and organs, causing swelling and degeneration, pain, skin rash, sun sensitivity, extreme fatigue and vulnerability to severe cases of infection.
Systemic lupus erythematosus (SLE) accounts for approximately 70 percent of all cases of lupus.* A major organ, such as the heart, lungs, kidneys or brain–as in my case–will be affected in approximately half of these patients. Brain involvement and central nervous system dysfunction–as well as its sister disease Antiphospholipid Antibody Syndrome (APS), or Hughes Syndrome, an autoimmune syndrome that affects vascular function and blood clotting–is thought to be a cause of the neuromuscular movement disorder, dystonia, in my specific manifestation of illness.
- 90 percent of people diagnosed with lupus are women.* The disease most often strikes in one’s childbearing years, though women and men of all ages may experience symptoms of lupus.
- There is no cure for lupus, though a patient may go into remission, whether long-term or short-term repeatedly over the course of disease. Nutritional therapy, mind-body exercise, avoiding triggers of my photosensitivity and reducing stress have been crucial for helping to keep lupus and APS (and thus dystonia) in remission for long periods of time.
Thanks so much for raising awareness! You’re right…not many people know about this.
I have Lupus and was devastated when I found out about 9 1/2 years ago. I was clueless and scared. People look at you and think you look fine but they don’t have a clue of what you are going through on the inside.Thanks for sharing and raising awareness!
The diagnosis of lupus can be so confusing and scary. You are right–so many people don’t know what’s really going on with you if you still look “fine” on the outside. Is your lupus under control right now, Daria?