May 16, 2009


may is lupus awareness month.

people like to say to me, "well, i know so-and-so who has lupus and she's doing great!" and "well, you look healthy!" okay, i understand the sentiment and thank you for trying to make me feel better (and it does!) but no, i'm not making this shit up.

i feel lupus is one of those diseases that ended up in the back heap, glossed over in medical school because it's one of WOMEN and MINORITIES. public perception of it's taken an amorphous shape. science has not "solved" it: why it occurs and how it's cured. there hasn't been a new drug developed for it in fifty years.

another thing that makes it hard to accept and understand (and therefore, believe) is the nature of the disease itself. no it's not cancer, where you target malignancies and aim to prevent it from spreading. there's no easily identifiable "enemy."

since people like framing illnesses as battles and wars (a metaphor i really hate), we can say for illustration's sake the enemy in the lupus battle one's own immune system. the body thinks its own organs are germs (foreign bodies) and starts attacking them. so, since we haven't figured out what it is specifically that makes the immune system behave badly, the catchall, radiation-type treatment for it are drugs that push down the immune system ... immuno-suppressants.

if you've heard of multiple sclerosis or crohn's, these are the same kind of thing; they're called AUTOIMMUNE diseases. but, they call lupus the "granddaddy of autoimmune diseases" because it likes to happen anywhere. any organ can be damaged from lupus, and some of the time, it's several. unlike AIDS, lupus has some additional weird shit going on that science hasn't pinpointed and the effects are really different for everyone.

some people will have mild cases where they feel constant fatigue and pain throughout their body; others might lose their kidney function and need transplants. others will die of complications ... stroke, heart attacks, infections from the medication. the disease is kind of unpredictable from day to day and over the course of your life.

(don't worry. just because you feel tired all the time doesn't mean you have lupus. there are tests.)

no, it's not cancer, and most people can live with lupus for long time, but many people will be living with it on very heavy drugs and (i hate euphemisms) a compromised quality of life. tell it like it is -- depressing living hell. and sure, death can come early.

but, this is what's really f-ed up about the whole thing:

it is two to three times more common among African Americans, Hispanics, Native Americans and Asians.

ninety percent of people with lupus are women.

and, more people in the US have lupus than AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, multiple sclerosis & cystic fibrosis combined.

with this huge population affected by lupus, why is there not more funding going into it's research and treatment? i'm not gonna say more, but i don't think you need to come up with any complicated theories explaining this situation.

1 comment:

Anonymous said...

There is a medical journal titled Lupus, published by Sage, quite popular among the neurologist. I get free access if you are interested....


You're right though, all people really seem to care about is Rituxin...