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Daughter's Death Inspires Mother's Battle Against an Elusive Disease

August 31, 1986|BARBARA BAIRD | Times Staff Writer

Fern Schiff was not worried about the health of her 14-year-old daughter, Judy, when she sent her to summer camp in August, 1979.

The Palms Junior High School ninth-grader was a healthy, athletic youngster, "a tomboy, really," her mother recalls.

But in just five months, Judy had succumbed to a form of cardiomyopathy believed to have been caused by a viral infection she contracted at camp.

In the 6 1/2 years since Judy's death on Jan. 26, 1980, Schiff has conducted a one-woman search for medical information to help her understand what caused her daughter's death.

When she realized how many questions remain unanswered about viral heart disease, she decided to establish an organization to support research seeking a preventive vaccine. The group is called ERACE (Eradication of Respiratory Ailments Due to Coxsackie/Echo Enteroviruses).

Researchers have found that viruses named Group B Coxsackie and Echo have been implicated in fatal heart diseases in humans, but the cause-and-effect relationship has been proved only in experiments with laboratory animals.

Difficult to Establish

The role of the viruses in human fatalities is very difficult to establish because the viruses disappear after the initial infection passes and are not detectable later when serious damage becomes apparent, said Charles J. Gauntt, a researcher and microbiology professor at the University of Texas Health Science Center at San Antonio.

The viruses often escape initial detection because they produce flu-like symptoms that may not be regarded as serious at the time, he said.

These viruses do irreparable harm that may not be detected until long after the flu symptoms have subsided, Gauntt said. Doctors can only infer that the virus has been present by finding the severe damage left behind, he said.

"Often this damage remains dormant and can go unnoticed for years once a person recovers from the initial illness, only to cause severe heart problems some years later," Gauntt said.

In young Judy Schiff's case, the damage became rapidly apparent. When she came home from camp she told her parents she felt fine, but she began to experience severe fatigue a few months later, her mother said.

A pediatrician at first prescribed vitamins, but when the symptoms worsened he ordered a chest X-ray that showed that Judy's heart was enlarged. She was hospitalized.

Her doctors ordered a year's bed rest, and mentioned the possibility of a heart transplant, but Judy's heart condition deteriorated very rapidly. She died only 2 1/2 months after diagnosis.

Deciding she had to do something to help her family recover from the loss, Schiff set up the ERACE organization for parents and friends whose lives have been affected by viral heart disease.

"After going though what we did with Judy, and not knowing anything about the disease and not being able to get answers to any of my questions, I want to do something so others wouldn't have to suffer as we did," said Schiff, paging through a scrapbook she has compiled in honor of her daughter and other viral heart disease victims.

ERACE has a core group of active members including Schiff and her husband, Harold, who are residents of Cheviot Hills; their neighbors Elaine and Warren C. Deutsch, and Charles and Anise Harkey of Baldwin Hills.

The Harkeys' son, Daryn, suffered viral heart disease and received a successful heart transplant at Stanford University Medical Center in 1982. Now 19, he is a student at California State University, Los Angeles, and can participate in most normal activities except contact sports, his mother said.

"He's our success story," said Elaine Deutsch with a note of pride.

Schiff said the group hopes to help more families, but it has not been easy to locate viral heart disease victims. An exact count of victims cannot be made because of the transitory nature of the virus, said Schiff, and medical centers will not reveal the names of patients.

Finally, she made contact with Gauntt at the University of Texas. Through contributions and fund-raisers, Schiff said her tiny organization has been able to raise about $1,800 for his research.

The six Group B Coxsackie viruses are "of the greatest clinical importance in causing heart disease in infants and young children," Gauntt said in a letter to group supporters.

The viruses cause a victim's immune system to overreact and attack his own body organs, he said.

While heart transplants can save some victims, he said, the ultimate answer is in prevention of heart damage. The hope of researchers, he said, is to find a vaccine.

ERACE's next meeting will be Sept. 29. Information on the organization is available by calling (213) 838-1994.

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