2006-05-18 / Community

Rare Disease Clubhouse offers hope

By Avi Rutschman avi@theacorn.com

When Pandora opened her dowry box, all the evils it held escaped and engulfed the world with crime, anger, suffering and disease. But she shut the box in time to save its only positive offering, the miracle of hope.

Sabrina Woodruff, an Oak Park resident, is no stranger to the power of hope. With help from her stepsister, Sandra Hancock, Woodruff founded the Rare Disease Clubhouse, a support group for those fighting rare and incurable diseases.

"Our goal is to raise awareness about rare diseases and to find better ways to help each other hang on for one more day," Woodruff, 44, said. "Tomorrow may be the day that a cure is found, and you only need hope to get there."

She decided to form the group when a friend's stepdaughter committed suicide in her early 20s after a long battle with a rare disease.

"She called me and told me that she couldn't stand the pain any longer and that she was at her wit's end because she couldn't afford her meds or her apartment," Woodruff said. "I guess we got our start because I did nothing and watched a friend's child die from hopelessness."

Woodruff suffers from ankylosing spondylitis, an autoimmune disease that is causing her bones to fuse together. There is no cure for AS, and medication required to slow the progression of the disease costs more than $450,000 a year.

"Morphine, methadone, hydrocodone, penteramine, the hardest narcotics known to man don't put a dent in the excruciating pain welding my bones together," Woodruff said. And "you'd be surprised how ashamed people get when a doctor gives them a prescription for opiates," strong drugs that still afford little relief for intolerable pain.

Even when medication does ease the pain, the knowledge that death is looming has a heavy psychological toll.

"For us, there are zero resources," Woodruff said. "We have each other, period, and we're on chemotherapy forever."

The group is chaired by Woodruff, Hancock, Barbara Baca and Dr. Stephanie Goodwin of Emory University in Atlanta, Ga. Its 17 members from all over the United States communicate with one another via e-mail and telephone.

The youngest Clubhouse member is "5, almost 6--a little girl with a rare cancer," Woodruff said, and the oldest is 87, and suffers from a disease similar to lupus.

The group operates a telephone support system called the Apocalypse Telephone Tree. The system mimics the Alcoholics Anonymous model by assigning sponsors to new members.

"It gives members a place to call 24/7 where they can actually talk to people who can really help because they are going through similar pains," Woodruff said.

The Clubhouse meets locally the first Saturday of every month from 10:30 to 11:30 a.m. at Lamppost Pizza in North Ranch.

"Many people are often too ill to make it to the meetings, but it is important to offer (the meetings) because it is empowering to say to oneself, 'I can go,'" Woodruff said. "If no one is well enough to come, we suck up all the coffee and snacks and then go home to make calls and see if everyone is all right."

Discussions at the meetings are often somber, centering on medicine, money and death. Members tell one another about helpful local businesses and hear advice from doctors and lawyers who volunteer to speak.

Family members are allowed at the meetings but often are dissuaded from attending.

"Victims usually prefer to vent sans family, especially when talking about issues such as euthanasia and physician-assisted suicide," Woodruff said.

The group is self-funded, supplementing its operating costs with the help of friends, family and local businesses. Booster Entertainment is one of the group's benefactors and gives toys and other treats to its younger members.

"Yep, some rare disease victims should be playing dolls, not battling death," Woodruff said.

The band Kane and actors such as Christian Kane and Elizabeth Rolm have expressed interest in helping the Clubhouse raise money.

"We would love to do a concert or something, but unfortunately, we don't know much about doing these kinds of events and don't have a place to hold one," Woodruff said.

Until cures are found for the more than 100 known rare diseases, Woodruff, a former pediatric ophthalmic medical technologist at Louisiana State University, said she will continue to dedicate herself to giving hope to others.

For information about the Clubhouse or to make a donation, call (818) 889-4025 or (818) 597-9090.

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