Newbie offers column for your approval

[Guest guest]

I realize this is kind of long but I thought you might like to see it

as a way of getting to know me a little better. As I said in my

intro, I am a freelance writer and have had a column as well in my

town's little paper for the past 8 years. Recently I wrote this

one. Hope no one is offended by the levity, I usually write a lot of

humor, though this one was toned down a bit.

Gloria

(From my monthly column called My Front Porch)

Up until recently, Lupus has not been what you'd call a high

profile

disease. You probably haven't seen any fundraising telethons or

had

someone call you or come to your door collecting and my reasoning for

this is, the name. Lupus. It sounds goofy. Like it ought to be

spelled Loopus. And saying the complete term is too much of a

mouthful, Systemic Lupus Erythematosis. Go ahead, try it. I've

even

heard medical professionals mispronounce it.

But the derivation of the words is interesting. Lupus comes from the

Latin meaning wolf, signifying the ravaging effects the disease can

have on a body. And erythematosis, meaning redness, for the bright

red butterfly-shaped rash that some get across the bridge of the

nose. One story goes that the rash resembles a wolf's bite. But

where ever the names come from, you have to admit, Lupus is a goofy

word.

This is the kind of stuff I think about and jot down while I do my

time in the waiting room of my doctor's office. I'm here for

my

check-up with the immunologist. These are good folks to see if you

happen to have Lupus or some other disease of the autoimmune system.

We're trying to get the pain in my joints and muscles under

control

without resorting to the Big Gun medicines. Steroids or immuno-

suppressants. So far, in my almost 20 years with Lupus, I have been

able to manage the symptoms with the use of a drug that is primarily

given to those unfortunate enough to contract malaria. Quinine

basically. Seems some poor schmoe with Lupus was traveling in some

mosquito-infested geography and came down with a ripping good case of

malaria, as if having Lupus wasn't bad enough. Well, lo and

behold,

after a while on quinine, the drug of choice for malaria, the

aforementioned Schmoe's Lupus symptoms quieted down as well. I

could

be wrong about some of the details of this amazing scientific find

but the gist of it is pretty accurate.

My original point was telling you that you probably have not heard

too much about Lupus in the past. But that's changing. I

applaud

the members of the SUNY sorority that " looped the bear " on

Main St.

in Geneseo, NY as a fundraiser for Lupus research and awareness.

Even though one disgruntled citizen thought it was in poor taste and

said so in a cranky letter to the editor of one of our county papers.

Lighten up, lady.

You need some big names to bring any cause to the public's

attention. Former New York Yankee, Tim Raines has spoken out as

someone who is living with Lupus. In an interview he gave to The

Miami Herald, he talked about never having heard of Lupus before his

diagnosis in 1999. My introduction was similar. After ten years of

doctor after doctor the proper tests were finally conducted. My

physician walked into the exam room where I sat in my lovely paper

outfit, announced in monotone that I had SLE, handed me a pamphlet

with some cheery title like, " So Now That You Have Lupus! " ,

gave me

my paperwork and told me to see the receptionist. All this as he was

turning to leave. Fortunately, he was soon to retire (I suspect he

had " retired " months before) and was replaced by someone much

more

sympathetic to my cause. I had to call the 1-800 number on the

bottom of the pamphlet to find out what Lupus was. I had never heard

of it before either.

In the past 20 years I have seen great advances in most of the well-

known diseases and illnesses. But research and awareness in the area

of Lupus and its companion diseases, sometimes known as orphan

diseases because they have no supporters or advocates, has lagged

behind. Until the last few years, that is. I recall one episode of

ER that dealt with Lupus and I'm sure that that had something to

do

with one of the main characters having a relative, in real life, who

suffered from it.

So I hope you will begin to see this goofy word, Lupus, more often

and respond when asked to support its research causes. Over the

years the motto for Systemic Lupus Erythematosis has been

" Someone

You Know Has Lupus " . Now you know one more.

©Gloria Slater. 2002