Coping with lupus unlike other ailments

[Guest guest]

Coping with lupus unlike other ailments

By TERI GREENE

January 22, 2005

They call it " the great mimicker. " Ruth Gordon-Bradshaw of Montgomery is

talking about lupus, the disease she was diagnosed with nearly 19 years ago.

Once a person is diagnosed, the disease's symptoms come and go throughout a

lifetime, mimicking the symptoms of other diseases.

Hearing the outgrowths of Gordon-Bradshaw's lupus is like flipping through a

medical textbook.

" Ten years ago, I had petit mal seizures. I've had pleurisy in my lungs

several times, " she said, thinking about the different conditions and

ailments she's had - there are just so many of them. " I've had TMJ

(Temporo-Mandibular Joint) syndrome, mitral valve prolapse, thyroid disease,

glaucoma and cataracts. "

That's just getting started. About 1.5 million Americans have lupus, an

autoimmune disease in which the immune system loses its ability to tell the

difference between foreign substances and its own cells and tissues. As a

result, the body makes " antibodies " directed against the patient's body. The

resulting reaction causes immune complexes, leading to tissue inflammation,

injury and pain throughout the body.

Gordon-Bradshaw is at the local forefront of lupus awareness and support,

facilitating a lupus support group that meets twice a month at Frazer

Memorial United Methodist Church.

Lupus patients, 90 percent of whom are women, are at greater risk for

cardiovascular problems, extreme fatigue, migraines, arthritis, anemia,

pregnancy complications and miscarriages, and problems with the kidneys,

lungs, intestines and skin.

The disease erupts in " flare-ups, " unpredictable bouts that can manifest in

any one of the problems listed above. They can be as simple as the eruption

of the " butterfly rash, " an extreme reddening across the cheeks and nose,

and as life-threatening as lung failure or heart trouble.

" The whole system is affected, " Gordon-Bradshaw said. " Very seldom do you

find one of us with just one of those. "

The disease can be treated with a regimen of medications such as Plaquenil,

CellCept and Prednisone, a steroid.

But even then, Gordon-Bradshaw said, life activity has to be severely

limited.

In 1991, lupus finally forced Gordon-Bradshaw, a woman who once worked five

jobs while earning a doctorate and raising a son as a single mom, into

retirement. The common symptom of fatigue, which set in early on, left her

drained.

" I would work until Thursday, and on Thursday night I fell asleep,

literally, at the dinner table, because of the fatigue. "

Gordon-Bradshaw is now able to alleviate her lupus with medications,

prescription and over-the-counter, but life isn't what it used to be. She

keeps a calendar full of daily activities she has to pack into half-days,

because she gets run down after four or five hours.

" I have to pace myself, " she said " I get so annoyed, because work is my

addiction. "

One of the worst aspects is " not knowing what to expect, " she said.

Lupus patients don't know whether, on a given day, they'll start losing

their hair, have severe stomach problems, trouble breathing, or any number

of medical problems. For Culbreth of Montgomery, lupus manifested in

the form of transverse myelitis, a spinal condition.

" About six months after being diagnosed (in 2000), I woke up one day and my

right foot wouldn't move, " said Culbreth, who also suffers from

lupus-associated colitis, arthritis, pain and weight loss - in eight months,

she's gone from 145 pounds to 115 pounds, she said.

Women in the lupus support group are from diverse age groups and ethnic

backgrounds, but the disease is most prevalent in African-American, Native

American and Asian women. The CDC reports that the highest death rate from

lupus is among African-American women ages 45-64.

But early diagnosis, the key to preventing fatalities and severe

complications from the disease, has become far easier to come by in the last

20 years, said Dr. Adahli Estrada-Massey, a Montgomery rheumatologist.

" Twenty years ago, we didn't have the ability to diagnose lupus as early as

we can now, " said Estrada-Massey. " We have more lab tests that are

suggestive of lupus, and we can start more aggressive treatment earlier. We

have better treatments for kidney disease and cardiovascular complications. "

Estrada-Massey stressed that because of increased risk for serious

cardiovascular problems, it's important for lupus patients to get regular

screenings for hypertension and cholesterol, to control their weight and

refrain from smoking. Gordon-Bradshaw's case came before these advances. It

took six years for physicians to diagnose her lupus.

" Physicians would tell me, 'It's all in your head,' " she said of her

experience two decades ago.

She said she traces her symptoms much further back from her diagnosis in

1986 - all the way to 1947, when she was 15 and began having the irregular

menstrual periods that followed into her adult years.

And looking back, she sees genetic links to lupus - something research has

begun to probe; her brother has polymyocytis, which like lupus is an

autoimmune disorder.

Deonye , another lupus sufferer, sees a connection within her family.

She said the only reason she was diagnosed relatively quickly was that her

mother had scleroderma, a disease also linked to lupus.

For Gordon-Bradshaw and others, it's heartening to see lupus slowly but

steadily gain more attention, not only in the medical community but in the

world at large.

Lupus Now magazine, a glossy quarterly that debuted last year, is one sign

that public awareness is growing. And locally, the support group has meant

the world to those coping with lupus.

" You're able to talk to people who know exactly what you're going through, "

said , 51, who had to retire from her job 10 years ago because of her

lupus symptoms, which include pulmonary hypertension.

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