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CHIEFTAIN

PHOTO/CHRIS McLEAN

‘We're the forgotten disease. We're not AIDS, not cancer and everything

else . . . A lot of it is because people don't know about it. They choose not

to discuss it, choose to ignore it. I've even had people ask me if it's

contagious.’ MEGAN QUINBY

Lupus victim fights

to stay ahead of disease

By KAREN VIGIL

THE PUEBLO CHIEFTAIN

Lupus has taken away

her kidneys.

Instead, dialysis

machines now do the job of separating water and wastes from Quinby's

blood. Her kidneys failed in December 2002, when she was near death and

hallucinated while in an intensive care unit as doctors worked to stabilize

her.

Today, the man-made

machines buy the 24-year-old Pueblo

woman life as she awaits a kidney transplant.

In a sense, she's

tied to the machines because of lupus, a widespread and chronic disease that

causes the immune system to attack the body's own tissue and organs.

Unless one happens to

spot the catheter inserted under her skin near her right collarbone and asks

Quinby about it, it would be hard to know that the attractive, always-in-motion

server at DC's on B Street

restaurant is anything but healthy and robust.

Still, hers is a

complex life.

" It's really

hard to give up three hours, " she said of her nighttime appointments with

the dialysis machines. " There are days when I come home. I don't want to

go back, because it's frustrating. I rely on people to take care of me and

sometimes that's not always perfect, " she said.

A family’s love

If all goes

well, Quinby will receive a transplanted kidney from her uncle, Doug Will of Loveland, in August. Her

mother had hoped to give her a kidney, but a history of minor problems with her

kidneys disqualified her as a donor.

For now, Quinby's

activities are centered around the thrice-weekly dialysis treatments and

learning how she must limit stress, work and even leisure activities. She must

not overburden her body that's already taxed with lupus and sometimes exhaustion

from dialysis.

She realizes that

those with whom she surrounds herself also are key to her well-being. If they

aren't positive influences, Quinby says, she's happy to let them walk away.

" This is my

life. This is who I am. I have had to accept that, " she said.

Quinby's health

problems began at age 14 with rheumatoid arthritis, which went into remission

during her high school years. During her first semester in college, though, she

started to have swollen ankles and was feeling badly.

Initially, a doctor

misdiagnosed her as having blood clots in her legs, but a second doctor figured

out that she had lupus.

She changed her

career plans and attended a Denver

culinary school with the aim of becoming a chef.

Those aspirations

were put aside, though, when Quinby realized that she would never be able to

maintain 16-hour days on her feet. The physical stress as well as living away

from home with a roommate she had just met and trying to manage her disease was

just too much. She simply had placed too much stress on herself and had tried

to leave her disease in Pueblo.

" I've learned

that when I take the next step in life, I do one thing at a time, " she now

says.

When Quinby returned

to Pueblo and

her parents' home, she said her lupus calmed down.

She went back to

college, continuing through last fall.

A rocky road

For a time, her lupus

was in remission. Quinby says that good time was partly due to Dr. Constance

Wehling, who briefly pulled her out of stage four of kidney disease - the stage

before kidney failure.

One thing that Quinby

has had to deal with is the fact that lupus, with its vague symptoms, is

difficult to diagnose under the best circumstances. In her case, Quinby says

she has never had much of the usual joint pain, rashes or mouth ulcers.

Instead, her ankles swell and she gets feverish and has a " feeling "

or " intuition " that the lupus is flaring, which is verified through

medical tests. Once during her illness, she even had to deal with a 40-pound

weight gain.

Quinby has some

suspicion that her lupus and others on her mother's side of the family who have

autoimmune diseases (resulting from the production of autoantibodies) represent

a genetic link for the disease.

She can't point to

any research to back up her theory. But that's part of the problem with lupus.

There hasn't been major research or drug breakthrough in 30 years, something

the Lupus Foundation of America is hoping to change through a recent

education/lobbying campaign.

Quinby says she is

frustrated that there haven't been any new advances in medication for lupus.

She notes that a stem cell transplant might have been a last-ditch hope for her

if a transplant donor wouldn't have been found, a reason why she supports the use

of stem cells for transplants and research.

To Quinby, people

don't recognize or understand lupus, perhaps because it is not a disease that

draws much attention or that is always evident in people's looks.

" We're the

forgotten disease. We're not AIDS, not cancer and everything else . . . A lot

of it is because people don't know about it. They choose not to discuss it,

choose to ignore it.

" I've even had

people ask me if it's contagious, " she said.

Diagnosis is

extremely difficult, too.

According to the

Lupus Foundation of America, there is no single test that can determine whether

one has lupus and it may take months or years for doctors to piece together

symptoms and accurately diagnose it.

Hope for the future

Quinby, though,

doesn't have years to figure out where she goes from here. She knows her

kidneys never will work again.

Around her neck, she

wears a butterfly charm, the symbol of hope for lupus victims. That's because

hope, dreams and determination are something of which she has plenty.

" I just want to get back to college, get

my degree and get going with my career, " she said.

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