All About Multiple Sclerosis

More MS news articles for March 2004

Multiple sclerosis: Catherine's crusade

March 2, 2004
Lidia Wasowicz

As with many multiple sclerosis patients, Catherine Dennes Akay's erratic descent from vibrant health began in the prime of life with deceptively innocuous, devastatingly misinterpreted symptoms.

Little did the athletically and academically gifted adolescent suspect the hazy dimming in her eye -- evaluated as a self-correcting optic inflammation -- and, two years later, the prickly tingling in her feet -- assessed as temporary nerve "noise" -- portended a disease that would alter the course of her life.

Doctors now recognize the visual change as a symptom of MS in more than half of patients and as a first signal of the disorder in some 15 percent.

"There are definitely times when denial serves as a very adaptive defense mechanism," Akay, 47, reflected in an interview with United Press International at her home in Corte Madera. "I forgot about the noisy nerves and optic neuritis and resumed my busy life."

The years melted away as the avid student and skier conquered the rigorous coursework at the University of California, Berkeley, and the challenging slopes ringing Lake Tahoe. In December 1979, as she was poring over notes in preparation for graduate school exams, the left side of her body froze. Panicked by the paralysis, she called her physician-father, who promptly arranged an appointment with a neurologist.

"The night before my visit with the specialist," Akay recalled, "I happened to watch a '60 Minutes' special on MS. (It) was an extremely sad story about these patients -- mostly women in their 20s to 40s -- paralyzed, in wheelchairs, unable to talk, without bladder or bowel control, separated from their children and spouses and living in group homes or board and care facilities."

The next day, the neurologist told her although no test was available to make a definitive pronouncement, he was virtually certain of the diagnosis: multiple sclerosis.

"I was 23 years old, all alone and knew nothing about the disease other than what I saw on '60 Minutes' the night before," Akay recollected. "I began to cry and asked him what I could do. At that point, he gave me a prayer card and told me to pray."

The specialist informed her the desultory degenerative disorder of the central nervous system had no known cause or cure and carried an uncertain prognosis.

Nearly 25 years later, all three statements remain true, but, rather than shed more tears, Akay has joined the ranks of those trying to make them less so.

Stunned by a report ranking MS as the most disabling -- by a complex measure incorporating the age of those affected and degree of impairment -- yet least funded of 11 diseases studied, Akay gave up her flourishing psychotherapy practice in 1999 to try to even those financial odds.

She began by founding a non-profit research fund whose name dictates its sole aim: Cure MS Now!

Akay insists her single-focus foundation fills a niche within the broader purview of the twin giants of MS research appropriations -- the National Institutes of Health in Bethesda, Md., and the National Multiple Sclerosis Society, headquartered in New York -- which in 2003 provided some $100 million and nearly $33 million, respectively, for a wide range of MS-related projects.

With requests routinely outpacing available revenues, Akay sees her mission as providing a funding filler for promising studies specifically aimed at finding a cure for MS.

Despite unpredictable rampages of the mercurial disease that have left the one-time star athlete at a painful loss for balance, Akay has maintained a grueling travel and speaking schedule in search of donors.

MS, the most common disabling neurologic disease of young people, affects as many as 500,000 individuals in the United States and up to 2.5 million worldwide, Akay likes to remind her listeners. Every effort should be made to quell this ravager of youth, she declares.

A practitioner of her preaching, Akay literally has given her life's blood to her cause. Since detecting the first hints of the disease, she and her family have been donating blood -- as well as money -- for research, a contribution that has led to a key discovery.

"We are a good family to study because we have male and female siblings with MS and male and female siblings without the disease," explained Akay, whose younger brother Mark Dennes has a milder case of the disorder that eats away at the myelin -- the protective covering -- of nerve fibers in the brain and spinal cord, causing varying degrees of mental and physical impairment.

Peering at the blood samples, neurologist Dr. Claude Genain of the University of California, San Francisco, gleaned a protein that appears to engage the myelin sheaths in a demolition derby.

"Dr. Genain tinted it gold and showed it to us under the microscope shortly after his discovery," Akay recalled. "In the laboratory, Dr. Genain has been able to stop this destructive antibody with complete success!"

The encouraging results may portend the development of several promising therapies that would bring his decade's worth of benchwork to the bedside, Genain remarked in an interview.

"I found evidence the antibodies are especially important and have a causative role in the progressive form of MS," he told UPI. "If we can target or remove or prevent the antibodies from doing damage, I think there's gain here for patients and for the community."

Under healthy circumstances, antibodies and other warriors of the disease-fighting immune system ward off potentially harmful foreign invaders, such as viruses or bacteria. However, in rheumatoid arthritis, lupus and other so-called autoimmune diseases, the body mistakenly turns its defenses against its own tissue. In the case of MS, the target is the nerve-shielding myelin.

Many experts think a viral trigger is responsible for the exorbitant error, a theory that has proved difficult to substantiate but that has gotten a boost from recent experiments. In laboratory tests reported in October 2003, for example, Genain found small marmoset monkeys developed an MS-like disease after being infected with a common herpes virus, called HHV6, one of several suspected as a cause of the human disorder.

"This is an unprecedented opportunity to understand how infection with a common human virus could lead to MS in a model system that resembles young humans," Genain explained.

Nailing down the cause would mark a significant step toward constructing a cure, researchers noted.

"I'm very enthusiastic about our virus work," Genain asserted. "If it can be carried forward, perhaps we could make the major discovery of how to stop MS before it starts."

In other experiments, Genain has developed a screening test for the so-called MOG antibody he espied in Akay, discovered another antibody apparently implicated in the disease, and created a novel means of delivering a nerve-promoting protein, called nerve growth factor, to help repair the damaged myelin and prevent further attacks.

"We have tried to fill in the funding gaps in MS research by providing some of Dr. Genain's funding, developing an effective, bipartisan political lobbying team and expanding to three offices (in California and Washington state)," said Akay, who has switched doctors to preclude any conflict-of-interest concerns.

Typically, researchers at academic medical centers rely on support from a variety of sources, including government agencies, private contributors and corporations, to carry out their investigations.

Even when successful, courting potential donors takes precious time and energy away from laboratory work, Akay noted. By following the money trail themselves, groups such as hers can free up scientists like Genain to stay the scientific course with fewer diversions, she said.

"Before Catherine came along, I spent over half the time writing grants and trying to get funding," recalled Genain, who has received grants from both the NIH and the national MS society. "If I was staying in my lab with the doors locked, spending 100 percent of the time doing research, I probably wouldn't be getting any funding at all unless I had a good angel."

Others see Akay in that role as well. In January, the producers at San Francisco's former NBC affiliate, KRON, selected her as an "Everyday Angel" for the premiere of a television series of the same name featuring individuals who make a difference.

"With her strength and determination, Catherine has inspired me enormously," Genain told UPI, "and when I feel down, I think of people like Catherine and other patients and their struggle, which keeps me motivated with renewed strength. In the last two years, she has made an enormous difference in my research, getting us over the top of the hill by providing funding for starting new exploratory projects that most likely would not have been funded otherwise."

Copyright © 2004, United Press International