It’s Never Lupus
Before my diagnosis, I didn’t know too much about lupus. In nursing school, I think lupus was mentioned once during a medical-surgical lesson, and the only thing that was drilled into our brains was that majority of patients present with the malar rash.
Note- When I sat for my nursing boards, there was a question on lupus. But as I was playing Mystery Diagnosis a few years later, lupus did not cross my mind.
When I mention to someone that I am living with lupus, I get one of two responses. “Ohhhh, my mom’s friend’s sister’s daughter has lupus… but she’s perfectly fine,” or “Did you see that Seinfeld episode?!?!?!”
Note- I *hate* Seinfeld.
Or… wait for it….
Note- Listen to the dramatic music playing at the 20 second mark when Cameron tells a boy’s father he may have lupus; I assure you this was not the case when I received my diagnosis.
Systemic Lupus Erythematosus (SLE), is an autoimmune disease that ravages different parts of the body. Virtually any organ system can be affected by lupus, is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. Though the disease can be life-threatening, lupus is considered an invisible illness; most people with lupus don’t look sick.
There are different types of the disease, but it’s understood ‘lupus’ refers to the systemic form.
Lupus is a chronic autoimmune disease in which something goes wrong with the immune system. The immune system creates antibodies designed to fight off infection, but those with the disease cannot tell the difference between foreign invaders and the body’s healthy tissues. Instead, the immune system creates autoantibodies which attack healthy tissue and organs and destroy them. Subsequently, the autoantibodies lead to inflammation, pain and damage to the body.
Research suggests an estimated 1.5 million Americans live with lupus, making it more prevalent than multiple sclerosis, cystic fibrosis, cerebral palsy and sickle cell disease COMBINED. Despite this, lupus continues to be underfunded for research and development for more effective treatment. The only medication specifically used for the treatment of lupus was not FDA approved until 2011.
Research suggests an estimated 1.5 million Americans live with #lupus, making it more prevalent than multiple sclerosis, cystic fibrosis, cerebral palsy and sickle cell disease COMBINED Click To Tweet
Of the 1.5 millions Americans living with lupus, 90% of them are women, and though all races are affected, the disease more frequently strikes African Americans, Asians, Hispanics/Latinos, Pacific Islanders, and Native Americans two to three more times than Caucasians.
So how a caucasian, eastern european Jew like myself was lucky enough to develop it is beyond me.
Lupus is not contagious, and it’s unknown what specifically causes the disease; research suggests genetics, environmental factors, and hormones have a hand in triggering the disease.
There is no cure.
Throughout the month, I’ll be continuing to write posts, including my own diagnosis
nightmare story, and information on signs/symptoms, complications and treatment options.
The more you know.
For more (reputable) information, please visit Lupus Foundation of America or the Alliance for Lupus Research.