Happy World Lupus Day!?
In honor of today's designation, I'd like to answer a couple recurring questions:
"What exactly is Lupus?" and "Wait... you have Lupus?"
Q: What exactly is Lupus?
A: [From http://www.lupusny.org/lupus.php:] Systemic lupus erythematosus (S.L.E.), commonly called lupus, is a chronic autoimmune disorder that can affect virtually any organ of the body. In lupus, the body's immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs, including the skin, joints, kidneys, brain, heart, lungs, and blood. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission.
Lupus is unpredictable, highly individualized, hard to live with—and sometimes fatal. To date, there is no known cause or cure. However, early detection and treatment can usually lessen the progression and severity of the debilitating disease.
Anti-inflammatory drugs, anti-malarials, and steroids (such as cortisone and others) are often used to treat lupus. Cytotoxic chemotherapies, similar to those used in the treatment of cancer, are also used to suppress the immune system in lupus patients.
Ninety percent of lupus victims are women, and the onset of the disease usually occurs between the ages of l5 and 44. Lupus is also a leading cause of kidney disease, stroke, and premature cardiovascular disease in women of childbearing age. Unfortunately, statistics predict that 5 percent of children born to lupus-diagnosed mothers will eventually develop the disease themselves.
Q: "Wait... you have lupus?"
A: Yes, and you might not have known that because I have tended to talk around the word. In my mind it's the "L" word that's only uttered when I'm cornered. Otherwise, I've either said nothing or I've made a vague reference to an overactive immune system or, if feeling wide open and sharey, I might have labeled it an autoimmune disease. (All true, by the way, but certainly lacking specificity.)
The truth is that I haven't known many people with lupus, and the few I knew of were older and in poor health (though I'm not even sure their overall conditions were entirely due to lupus). It scared me, and I didn't want it to depress me. As a teen just getting control back over my health, it wasn't an image that I wanted to remind myself of, and it certainly wasn't the way I wanted to introduce myself to the whole social world at college (or later, law school or the big bad romantic and professional world).
Lupus primarily affects women of childbearing age. Lupus patients' experience covers a wide spectrum, from debilitating to easily lived with, and one person's experience with the disease can change over time, through periods of flare ups and remission, stages of life, and improved treatment strategies. It is important to me and for me (and would have been incredible for the me of a decade ago) to see people with lupus working within their abilities to live the healthiest, and most active lives possible. I think public, athletic events are important for people with lupus, their families, friends, communities, and legislators to see. Selfishly, I'm getting excited to meet the other team members and chase some positive energy.
Time to learn from the other "L word" and be out and proud. This blog's my coming out party.
Feel free to ask any other questions, about my experience, meds, etc.... or something I can google about lupus and share with the class. As always, please share this as widely as you'd like.
I'm so grateful for the support I've gotten so far. Thank you for your pledges, your emails, and for telling me that someone other than my parents is reading!
[Coincidentally, the amount pledged broke $1,000 today!]
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