Family wages war on fatigue disorder> Victims easy prey to charges of laziness

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When she was 9 years old and a pupil at Abraham Lincoln School in Bangor, Gail Epstein suffered a bout of scarlet fever. Ever since then, she has needed more sleep than most people.

Her father, Harry, the well-known owner of Epstein’s Inc., joked that his daughter was headed for a career in mattress-testing.

There were other lasting effects of the illness — occasional joint pain, bad knees — that she made excuses for or ignored. It wasn’t until a few years ago that Gail Epstein Kansky, now in her 50s and living in Needham, Mass., was diagnosed with a mild case of chronic fatigue syndrome.

Her own diagnosis was a footnote to a family crisis that has dominated Kansky’s life since the early 1980s. With help from her husband, Bernard, a Boston lawyer, she has become a chronic fatigue crusader, educating the public about the illness and raising money for research with a special boat donation and resale initiative.

In 1983, the Kanskys’ 17-year-old daughter, Kim, had to leave summer camp in Oxford because of exhaustion, fever, weakness and other symptoms that looked like mononucleosis.

It took 18 months and 12 doctors to diagnose the college-bound young woman, who was told she had lupus, multiple sclerosis, depression. There was little comfort in the final diagnosis of chronic fatigue immune dysfunction syndrome, a rarely researched, poorly understood disease with a name that makes victims easy prey for accusations of laziness.

From the start, the Kanskys faced rampant skepticism from friends and family who focused on the “fatigue” in chronic fatigue syndrome. “It’s all in your head,” “Look on the bright side,” and “Get more sunshine” were some of the less helpful comments.

“Some family members suggested she just needed psychiatric help,” Kansky recalled in a recent telephone interview from her summer home in Hull, Mass. “They told us to stop babying her.”

Now nearing 30, Kim’s condition has worsened with time. She earned a degree in special education after 7 1/2 years, and she maintains her own apartment, but she is almost totally house-bound, cared for by her mother.

Gail Kansky said there is evidence of a genetic factor in chronic fatigue syndrome, a possibility that successive generations may suffer with increasing severity. She is taking full advantage of her relative good health. This summer, dissatisfied with the two national organizations for CFS, she began her own all-volunteer, nonprofit effort, the National CFIDS Foundation.

The group already has contacts in 39 states. Along with increasing awareness of the disease, a major goal is to push for research into the causes of immune dysfunction, including CFS and similar disabling conditions such as fibromyalgia, chemical sensitivity and Gulf War syndrome.

A natural introvert, unlike her feisty daughter, Gail Kansky was terrified the first time she had to represent the foundation before a crowd.

Watching from the wings, Kim Kansky is appreciative — and sometimes consumed by guilt, her mother said.

“She feels she ruined our lives,” Kansky said. “I tell her she didn’t ask for this. I’m sure if it had happened to me, my mother would have responded the same way.”

Symptoms from headaches to sleeplessness are draining, but the toughest part of CFS for Kim Kansky and other patients is the cognitive problems associated with the disease — the struggle with simple math, the memory lapses.

“It’s what bothers patients the most, despite the excruciating pain,” said Gail Kansky. “Losing part of your mind is the worst thing.”

As a youngster in Bangor, she earned straight A’s but managed only a D in algebra. A guidance counselor told her she wouldn’t make it at Bangor High School. At a private high school in Waltham, Mass., the young woman from Maine was valedictorian.

Today, Gail Kansky suspects her problems in math were linked to chronic fatigue syndrome.

During a recent interview with a hearing-impaired visitor, Kim Kansky amazed herself when she began to communicate in sign language, bypassing the interpreter. She had learned to sign in college, but thought the skill was lost to her illness.

The incident assured her that “it’s there, she just can’t access it,” said her mother.

On the rare days when they have energy to venture outside, CFS sufferers may look as healthy as anyone else — a misleading appearance, Bernard Kansky said.

“Most people don’t realize their stamina level is so minimal they have to rest for several days in order to get to a doctor’s appointment,” he said. “They’re wasted by things you and I would take for granted, like going to the convenience mart to buy a newspaper.”

After Kim Kansky’s diagnosis, her father began to take on legal work for other people with the disease who sought disability or Social Security benefits. Their battles were complicated by their own lack of energy, and by public misunderstanding of chronic fatigue.

Bernard Kansky, a graduate of Boston University and a former associate of high-profile lawyer F. Lee Bailey, said the CFS cases have grown over the years to be 60 or 65 percent of his practice.

“They tend to be marginally profitable, but I do it to help patients who might otherwise lose their homes and cars,” he said.

As if the family’s commitment to the cause wasn’t already strong enough, a new idea for CFS support surfaced about five years ago. Bernard Kansky describes the birth of the Marine Fundraiser as a typical husband-and-wife discussion.

One day he told Gail he was going to fix the family powerboat.

“No, you’re not,” she said.

From that difference of opinion over household priorities came an ingenious plan that has given the boat-loving lawyer continued access to the water while eliminating the costs that sparked arguments. Best of all, the project has raised more than $100,000 for chronic fatigue research.

Boat donors are reeled in by the income tax deduction, made easy by Bernard Kansky’s preparation of the paperwork. With volunteer help from retired members of his local boating club, Kansky takes care of any necessary surveying, advertising, hauling and repair work. For the donor, the potential hassle of unloading an unwanted boat is transformed into an easy and charitable armchair transaction.

Kansky resells the boats, and the money goes to research. He occasionally takes a potential buyer out on the water for a test sail. “I’m more than thrilled to go out and feel the cool wind on my face,” he said. “But the most rewarding thing is when you’ve built up enough money to help someone’s research.”

Vanderbilt University microbiologist and infectious-disease specialist Charles Stratton credits the Marine Fundraiser with saving his study of a microorganism that may be linked to chronic fatigue syndrome.

Last summer, after a Vanderbilt colleague fell ill with a form of immune dysfunction, Stratton and fellow scientist Dr. William Mitchell switched their focus to CFS. They already had funding to look at the organism’s role in heart disease.

“It’s fairly difficult to change horses in the middle of the stream,” Stratton said. “All we had was an interest in the organism and a lot to learn. It takes time to develop data and expertise.”

At government funding sources such as the National Institutes of Health, data are required before dollars are handed out. The biggest checks go to scientists with some proof that their theories are valid — and proof costs money.

With technologists, graduate students, equipment and supplies, the Vanderbilt laboratory costs $30,000 a month to operate, Stratton said. The Kanskys donated $15,000, then $10,000 more, keeping the lab open long enough for other funding sources to be found.

“I can honestly say that if they hadn’t been there at that time, our work would have ground to a halt,” Stratton said.

He expressed respect and appreciation for the grass-roots effort. “We as individuals have choices on how things get done. We can sit back and wait for the government to do it, or we can roll up our sleeves and do it ourselves.”

Bernard Kansky was quick to acknowledge the selfish motive in his wife’s devotion and his own fund-raising work.

“We want the job done, the disease cured, so we can go back to our normal life. We would be thrilled to have it over with,” he said. “I’m upset that my daughter has lost 14 years of her life. But I believe there will be a cure or a treatment found.”

Local support groups for chronic fatigue syndrome may be contacted by calling Susan Nelson in Thorndike, 568-3755, and Sandy Woodward in Blue Hill, 359-2541.