Monday, December 29, 2003

Minister reaches out to others with his rare illness

Porphyria support network: Offers hope

By Howard Wilkinson
The Cincinnati Enquirer

He suffers from an illness that wracks his body with near-intolerable pain, a disease called porphyria, so rare that even many of the best doctors don't know how to treat it.

The Reverend Richard Fisher of Clifton watches as nurse Andrea Cline of Independence, Ky. prepares his intravenous medication.
(Glenn Hartong photo)
Five days a month, he lies on a reclining bed in the Christ Hospital Cancer Center as a thick brown liquid medicine is fed into his veins. It's a medicine that, while it controls the pain, leaves him weak and confused, his mind so dulled that he has to struggle to find the words to make himself understood.

Yet the Rev. Richard Fisher considers himself among God's blessed.

"I have angels all around me," the pastor emeritus of Clifton Avenue Church of the Nazarene said one morning last week, as nurse Andrea Cline hooked him up to an IV. "Andrea's one of my angels.''

"You're an angel too,'' responded Cline while she checked the molasses-like medicine, Panhematin, which is derived from processed red blood cells and costs about $1,200 a dose.

In fact, there are many who feel blessed by Fisher's strength and presence: his parishioners at the Clifton church he served for 20 years; and hundreds of other porphyria sufferers around the country who are part of the informal "porphyria support'' network he created. "I just want the people out there who are suffering from this disease to know there is help out there,'' said Fisher.

Porphyria is not really a single disease, but a group of at least eight disorders that differ considerably from each other. Each, though, is caused by the lack of a specific enzyme in the body. The condition usually is inherited.

For nearly 18 years, Fisher has suffered an extremely rare form of the disease, one with symptoms including severe abdominal pain, constipation, weakness of the arms and legs, rapid pulse, insomnia, and, in some cases, emotional problems.

Just 15 Americans per million have this form of the disease. Fisher knows of only a handful cases in the area - a woman in Villa Hills, a 4-year-old in West Chester, and a few others.

For them, he conducts support group meetings at Christ Hospital, or invites them to his parsonage home in Clifton.

Fisher also has an extensive e-mail list that includes porphyria patients around the country that he uses to spread information about research, Medicare law, and new treatments, like the medication Fisher is getting.

"I have always thought that those who know the most do the best,'' said Desiree Lyon, executive director of the American Porphyria Foundation, a Texas-based organization that works to keep awareness of the disease before the public. "That is Rev. Fisher. He knows the most, and he shares what he knows.

"He is a faithful person we can always call on to help,'' Lyon said. "He is a godsend to me.''

Pain led to diagnosis

Fisher's porphyria was diagnosed in 1986. While at a pastors' conference, he was wracked by excruciating pain. But the illness quickly went into remission until 1992. Since January 1999, he has been going to Christ Hospital Cancer Center for five consecutive days of treatment, followed by a three-week period without the medicine.

The medicine, Panhematin, is made by Ovation Pharmaceuticals, an Illinois company that specializes in medications for rare diseases.

"It's liquid gold,'' said Fisher, as nurse Laura Lucker popped into the room to check on the IV.

Medicare pays for Fisher's Panhematin because it is given intravenously at a qualified medical facility. If it were not for Medicare, his treatment would cost about $180,000 a year.

"I'm a preacher; and preachers don't have any money,'' Fisher said. "Praise the Lord I am able to have this treatment. And I want others to know that they can, too.''

There are frustrations for the Church of the Nazarene minister. He can no longer make pastoral house calls. The medication leaves him tired and listless for days at a time, with little energy left for his wife, grown children and grandchildren.

But he still preaches sermons at the church, sitting in a wheelchair. "Whatever else is wrong with me,'' Fisher said, "I can still talk up a storm.''

Associate pastors do much of the day-to-day work. One of them, Troy Graham, 27, recently left the Navy after stints on board the USS Kitty Hawk in the Arabian Sea and the Persian Gulf. Graham was a teenager when he moved to Cincinnati with his mother; Fisher took him under his wing and the pastor "became like a father to me.''

"I never cease to be amazed by him,'' said Graham. "Most people who take that medication are left so weak they don't want to talk, don't want to do anything.

"Rev. Fisher goes home from the hospital, and, weak and tired as he is, picks up the phone to call me, every day,'' Graham said. "He is a strong man, a strong man of faith.''

About the disease

• Porphyria is not a single disease, but a group of at least eight disorders that differ considerably. The common feature among them is that they all result from the accumulation in the body of chemicals called "porphyrins'' or "porphyrin precursors". These chemicals are normal in all people, but normally don't accumulate.

• Symptoms mostly affect the nervous system or skin. Skin problems can involve burning, blistering or scarring of sun-exposed areas, which is why some porphyria sufferers must avoid direct sunlight. Other forms have symptoms of abdominal pain, insomnia, rapid pulse, high blood pressure, and pains in the arms and legs.

• Disease triggers:

Hormones especially in women during the second half of their menstrual cycles.

Diet: Fasting, restriction of calories, or low-carbohydrate diets can cause attacks. A high intake of carbohydrate can shorten the duration of an attack.

Exposure to certain chemicals found in cigarettes, insecticides, and weed-killers, according to some studies.

Extreme emotional distress or physical fatigue.

Alcoholic beverages.

• This disorder is more common in Europe than in the United States.

• Most famous porphyria sufferer, 18th century English monarch, King George III.

• Hereditary coproporphyria is extremely rare; there are fewer than 300 diagnosed cases in the U.S.

Learn more about the disease:



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