CHARLESTON — Just days before the opening of the 2002 legislative session, House Health and Human Resources Committee Chairman Don Perdue knew something was terribly wrong with his body.
Perdue had pain in his joints. He was fatigued. His vision was failing him.
“They had to literally help me out of my chair on the House floor,” Perdue recalled. “I was severely debilitated.”
The night before the session began, a blue rash broke out from Perdue’s knees to his feet. The next morning, state Sen. Dan Foster, a physician, scheduled an appointment for Perdue with Charleston rheumatologist, Dr. Tom Howard. Former House Minority Whip Scott Varner drove Perdue to Howard’s office.
It didn’t take long for Howard to deliver a diagnosis: Perdue had Wegener’s granulomatosis, a rare vascular disease that attacks a person’s blood vessels, and eventually their lungs, kidneys and other organs.
Untreated, Wegener’s can kill quickly.
“It’s always lying in the weeds,” said Perdue, D-Wayne. “I just have to keep it in the weeds.”
Perdue, 59, spoke publicly about his battle with Wegener’s for the first time recently. He’s been on sick leave from his job as a Kroger pharmacist for the past four months. The disease flared up following several years of remission.
“I just saw how dangerous this disease is,” Perdue said. “There are people out there who now have this and don’t know it. I don’t want to leave the public eye without having had the opportunity to talk about it.
“It’s a public health issue. A huge number of people don’t get it diagnosed until it’s too late.”
Wegener’s cause is unknown. Symptoms include sinus pain and congestion, nosebleeds, hearing loss, loosening of teeth, poor vision, skin nodules around the elbow, and pain and swelling of the joints.
Specialized blood tests or organ biopsies are most often used to diagnose Wegener’s. The disease was named after a German pathologist, Dr. Friedrich Wegener, who first reported on it in 1936.
The disorder affects only about one in 30,000 people, mostly middle-aged men and women.
Wegener’s is treated with steroids and immune system suppressants. It usually takes about three to six months before the disease goes into remission. Patients, however, must continue to take drugs to keep Wegener’s at bay.
Perdue knows firsthand the dangers of not keeping up with the drug regimen required to fight Wegener’s.
Last summer, Perdue stopped taking the immune-suppressing drugs for two weeks while preparing for sinus surgery. He wound up as sick as he was when the disease first struck five years ago.
“I thought I was bulletproof until I heard the gunshot,” Perdue said. “My eyes got so bad, I was messing up numbers and letters. You can’t do that if you’re a pharmacist.”
Since being diagnosed with Wegener’s, Perdue has discovered that an unusually large number of Wayne County residents have the disease. The lawmaker has counted 10 people who live within 10 miles of his home in Prichard.
Perdue also learned that 20 years ago the National Institutes of Health launched a study to examine the high prevalence of Wegener’s in the Huntington metro region, which includes Wayne and Cabell counties, as well as counties in Kentucky and Ohio. The study was abandoned, however, the results never reported.
“They lost their funding,” Perdue said.
Perdue diligently takes his prescriptions now. He gets his blood tested twice a month. His health has improved, but the disease still hasn’t gone into remission.
He hopes to return to work as a pharmacist in 2009, and he doesn’t plan to miss any of the legislative session, which starts in February.
“I’m confident I will be fine,” Perdue said. “I know what the disease is. I know what the treatment is. I know what I have to do for the rest of my life.
“But I worry about other people. The question is: How many folks are out there who have Wegener’s and don’t know it?”
West Virginia
Delegate Don Perdue has rare vascular disease
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