Rare disease doesn't keep Graham woman down

[Guest guest]

Rare disease doesn't keep Graham woman down

Burlington Times News - Burlington,NC*

By CHARITY APPLE/Times-News

September 25, 2007

http://www.thetimesnews.com/articles/anderson_6101___article.html/dis

ease_time.html

Danette has dealt with sinus infections most of her life.

" I'd have one or two a year, get a round of antibiotics and

everything would be hunky-dory, " she said in an interview Friday

afternoon.

All that changed in 1996.

" I got some antibiotics but the whole left side of my face was

stopped up. The only thing that helped was to put hot rags on my

face in the tub. "

By the end of December, was referred to Chapman McQueen at

UNC Hospitals. After X-rays and CT scans, McQueen told her " that

something else is going on here. "

" He said it was one of four diseases and Wegener's granulomatosis

was one he mentioned, " she said.

At the time, the Graham resident had no idea what Wegener's was,

much less that she might be suffering from it. In January, 1997,

underwent sinus surgery. A biopsy revealed sores and ulcers

on the right side of her face. She seemed to recover from the

surgery just fine but by the middle of March, her right ear was

bothering her. Then she developed " saddle nose " — " a side effect of

Wegener's, I later found out. It's where your nose caves in. "

Allergy tests revealed that yes, was allergic to mold and

mildew but a blood test showed that she did indeed have Wegener's

granulomatosis, a rare autoimmune disease which affects people of

all ages from children to older adults.

Wegener's is one of several diseases classified as vasculitis and it

is defined by The Vasculitis Foundation as " an inflammation of blood

vessels, arteries, veins or capillaries. " The disease affects 1 in

30,000 people and there is no indication as to what causes it or if

it is hereditary.

In an educational pamphlet the foundation indicates that

when " inflammation occurs, it causes changes in the walls of blood

vessels, such as weakening and narrowing that can progress to the

point of blood vessel blockage. "

Symptoms can include:

•Fatigue/weakness

•Chronic sinusitis/nasal allergies

•Cough/shortness of breath

•Lung inflammation

•Asthma

•Joint pain/facial soreness

•Abdominal pain/gastrointestinal bleeding

•Kidney problems (bloody or dark urine)

•Nerve problems (numbness, weakness or pain)

•Changes in vision

•Severe headaches

•Skin lesions/rashes

•Fever

" I would have headaches that were so bad that I'd have to put my

head down on the desk, " said. " And I just felt so tired all

of the time. "

After the diagnosis, was admitted to the hospital eight

times.

" We can joke about it now — the fact that I was a frequent visitor, "

she said. " But back then, it was so scary. I wasn't sure if I would

come home or not. "

is currently taking the medication CellCept and has been on

prednisone " pretty much the whole time. "

Vasculitis Awareness Week is this week and is doing her

part to get the word out about the disease. During the last six

years, she's helped raise $66,000 for the Vasculitis Foundation. A

Poker Run was held just a couple of weeks ago and it raised $10,000;

all of the bands donated their time. The Alpacas have played the

event all six years.

" This isn't for me. This doesn't help with my medical bills or

anything. It goes toward research and education, " she said. " This is

supposed to be a rare disease but every time I turn around, I meet

someone diagnosed with it. "

, 49, is doing OK now. She works as an accountant at

Andersen Products in Haw River. Her family and co-workers are

supportive of her fund-raising efforts. She is married to Randy

and has two daughters and two grandchildren and another

grandchild on the way.

" I've been very fortunate. Right now, I just kind of go with the

flow. I'm so susceptible to illnesses. I have to have a flu shot and

a pneumonia shot. But I can't slow down. I can't stop living. If I

slow down, the disease is winning. "