September 16, 2008

Area Women Offer Support for People With Sarcoidosis

By Eric Eyre

Andrea Acton and Yvonne James don't look sick, but they could die anytime.

Acton and James have a disease called sarcoidosis, an immune system disorder. The disease causes inflammation that produces tiny lumps of cells, called granulomas, in their bodies' organs.

Last month, comedian Bernie Mac, who had sarcoidosis, died of pneumonia. Pro football Hall of Famer Reggie White, a defensive end with the Green Bay Packers and Philadelphia Eagles, also died from heart complications, most likely caused by sarcoidosis.

There's no cure for the disease, and the cause is unknown.

"It's scary," said James, who lives in Cross Lanes. "It makes your immune system non-effective. When people like Bernie Mac die, you realize the seriousness."

She and Acton, who lives in Big Chimney, recently met through an online chat group for people with sarcoidosis. They've decided to start a support group of their own here in West Virginia, the first of its kind in the state.

The group, which plans to meet monthly at Elk River Church of the Nazarene in Mink Shoals, will include sarcoidosis patients, family members, friends and doctors.

"It takes all of those people to make it through your life," said Acton, 29.

She was diagnosed with sarcoidosis in 2005 after a lung biopsy.

In previous years, she had a bad cough. Her body would get hot suddenly, then cold.

"I couldn't breathe," recalled Acton, a former phlebotomist who worked at Charleston Area Medical Center. "I was really sick. I felt like I was going to die."

James, 57, had similar symptoms. She was diagnosed with sarcoidosis in 1993.

"Just taking a shower made me short of breath," she said.

Sarcoidosis can form in any part of the body, but it usually starts in the lungs or lymph nodes.

The disease occurs mostly in people ages 20 to 40. In the United States, the disease most often affects African-Americans, especially women. People of Asian, German, Irish, Puerto Rican and Scandinavian descent also are at risk of having the chronic illness.

Many people with sarcoidosis have no symptoms. Sometimes, the disease is mild and goes away within a few years, even without treatment. In others, sarcoidosis slowly gets worse and can cause permanent organ damage.

"Our lungs could collapse at any time," Acton said.

Sarcoidosis is usually treated with prednisone, an anti- inflammatory drug.

Because the disease can affect so many organs, Acton and James see about 10 physician specialists. It's not unusual for them to have four doctors' appointments a week.

Both women also had to quit their jobs to battle the disease.

"You're feeling fine one moment, the next you're sick," said James, who uses a pacemaker to control her heart's irregular rhythm - caused by sarcoidosis.

Acton said she sometimes must wear a mask over her mouth during the winter months to protect against colds that can flare up to full- blown pneumonia in just a few days.

"I could sleep for 19 hours strong and still feel tired," Acton said. "I look fine, but by this evening, I may not be able to get out of bed."

Acton and James said West Virginia has no doctors who specialize in sarcoidosis. They sometimes travel to Johns Hopkins University in Baltimore and the Cleveland Clinic for treatment.

"If anything, you have to step up and advocate for yourself," Acton said.

Acton and James said the disease is especially hard on families of sarcoidosis patients.

"It's a silent killer," said Acton's husband, Curtis. "The disease is slowly killing them, and there's nothing I can do. It's hard to understand what they're going through. It's tough on us as a family."

Acton and James have designed a symbol - a purple ribbon dotted with snowflakes - for their support group.

Like a snowflake, no two people with sarcoidosis are alike. The disease affects different organs in each person. Symptoms are different.

"When someone with sarcoidosis dies, we say another snowflake has fallen," Acton said.

Acton and James hope their group will increase awareness of sarcoidosis in the Kanawha Valley and the rest of the state. They want to educate and empower people with the disease.

"Five years ago, one of my doctors gave up on me," James said. "He said I was just going to slowly die. Well, I'm still here."

For information about the group, contact Acton and James at 550- 7229 or 545-0922, or e-mail them at [email protected] or [email protected]

Reach Eric Eyre at [email protected] or 348-4869.

Originally published by Staff writer.

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