News

May 13, 2009

Lupus victims tell their stories

Support group wants public’s help to lobby to maintain Pa. funding for Lupus Foundation.

By Steve Mocarsky smocarsky@timesleader.com
Staff Writer
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WEST HAZLETON – When Linda Quigley was about 23, she began getting rashes on her legs and always felt fatigued.

It took doctors six years to properly diagnose the now 57-year-old Hazleton resident.

Kay Steiner, 67, of Hazleton, has had the same illness – although it manifested itself differently – since she was a teenager. She was diagnosed only six years ago after her brother told her about his daughter being diagnosed with the disease.

Victim after victim tell similar stories about their experience with lupus – a chronic, inflammatory disease in which the body’s immune system fails to serve its normal protective functions and instead forms antibodies that attack healthy tissues and organs.

Lupus symptoms can mimic those of many other diseases.

“A lot of doctors treat the symptoms, but they don’t realize all those symptoms add up to one condition,” explained Cynthia Donlin, facilitator of a lupus support group that meets the second Tuesday of each month at Bowl-Arena in West Hazleton.

Also originally misdiagnosed, Donlin started the group and has been working since 2001 to educate the public.

“It lets me know I’m not alone and gives me the opportunity to share some of my experiences,” said Joan Baran, a 73-year-old retired registered nurse from McAdoo.

“I’ve had lupus for 26 years. It’s touched about every system in my body. … I’m living proof you can survive,” Baran said.

The group also helps families of lupus victims.

Cindy Waschko, a pharmacy technician from Sugarloaf Township, has five children. Two of them have lupus.

“We never know what’s going to happen next. If they get sick or run down, the body just attacks itself. … It’s been an emotional rollercoaster for the whole family,” Waschko said.

At Tuesday’s meeting, the members heard Dr. Stacie Sando, an associate at Degenhart Chiropractic in Hazleton, tell how chiropractic treatment and massage can help relieve muscular-skeletal pain and joint inflammation associated with the disease. After the meeting, she performed free spinal checks while Ann Marie Zubris – one of four massage therapists at the office – gave members free massages.

Members also learned that the state Senate passed Senate Bill 850, which cuts all funding from the state Department of Health’s budget for the Lupus Foundation of Pennsylvania’s programs – its only source of funding. She urged the public to contact state representatives and ask that they vote against the bill.

She also hopes the public will attend the group’s Taming of the Wolf Festival – a fundraiser at St. John Bosco Church Hall in Conyngham on Saturday.

IF YOU GO

What: Taming of the Wolf Festival

When: 9:30 a.m. to 2:30 p.m. Saturday

Where: St. John Bosco Church Hall, Route 93, Conyngham

Why: Entertainment, health screenings, crafts, art auction, refreshments, bake sale and basket raffle to benefit the Lupus Foundation.

QUICK FACTS

• An estimated 1.4 million to 2 million Americans have been diagnosed with lupus, making it more common than leukemia, multiple sclerosis, muscular dystrophy and cystic fibrosis – combined.

• Lupus can occur at any age and in either sex; it appears 10 times more frequently in women than in men.

• The cause of lupus is unknown. While scientists believe there is a genetic predisposition to the disease, there is no known gene that is thought to cause the illness.

• Symptoms vary widely and can include extreme fatigue, headaches, painful or swollen joints, fever, anemia, swelling in feet, legs, hands, and/or around eyes, pain in chest on deep breathing (pleurisy), butterfly-shaped rash across cheeks and nose, sun or light-sensitivity, hair loss, abnormal blood clotting, fingers turning white and/or blue when cold, mouth or nose ulcers. Most people with lupus do not experience all of these symptoms.

• Many of the symptoms occur in other illnesses besides lupus. Lupus is sometimes called “the great imitator” because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease and a number of heart, lung, muscle and bone diseases.

ON THE NET

To learn more about lupus, visit www.lupus.org .

 

Steve Mocarsky, a Times Leader staff writer, may be reached at 459-2005.

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