The New York Times - October 5, 1986
Cheryl P. Weinstock

And even in 1980, when she finally did find a physician at North Shore University Hospital in Manhasset who correctly diagnosed her illness as lupus, she was referred to yet another doctor, in Manhattan, for treatment.

"There were times over the last six years I really didn't have the energy to take the subway into the city for treatment because I was in great pain," said Mrs. McCray, who is 34 years old. "But I didn't have a choice. I tried to find a Long Island doctor to care for me and I couldn't."

A few months ago, however, that changed. Mrs. McCray is now back as a patient at North Shore, since it recently opened the first lupus treatment center on Long Island.

According to Dr. Richard Furie, the physician in charge of the center, "There's been a major void in rheumatology at this hospital and we decided to fill it."

But some experts say that treatment in faciliies like the new center is not the best approach for the lupus patient.

Lupus erythematosus is a chronic, potentially serious inflammatory disease that can affect almost any part of the body. It is somewhat similar to arthritis, causing joint pain and swelling, leading many medical experts to refer to the two disorders as cousins.

More than half a million Americans have lupus, with about 50,000 new cases diagnosed each year. It is more common than muscular dystrophy, multiple sclerosis and even leukemia.

The name lupus is derived from its typical symptom, a red rash across the face said to resemble a wolf bite. In some patients, however, the incurable disease, which tricks the body's immune system into attacking its own tissues, is mild, affecting only the skin.

For others, lupus can result in damage to vital organs such as the kidneys, brain, heart and lungs.

Because it is an erratic and unpredictable disease, with symptoms that wax and wane, lupus can stump even the best physician. Even after diagnosis, choosing the best treatment is difficult because of the changing character of the illness.

According to Enid Engelhard, a social worker for the New York City chapter of the Lupus Foundation of America, "A lot of Long Islanders who call for referrals insist on coming into New York like it's the magic place to be. They feel that they'll get better care and better doctors."

"But now that we have a center on Long Island that specializes in the illness," she said, "it'll be easier to convince our patients they can get good care close to where they live."

Mrs. McCray said she traveled to the city for so many years because her doctor understood her condition so well. "He cared about how I was taking the disease and worried about me the person," she said. "That always gave me a little leap."

Although its most fearful impact is the physical suffering it can inflict, lupus also takes a heavy psychological toll. The disease occurs 10 to 15 times more frequently in women than men, according to Dr. Robert Lahita, associate professor at Rockefeller University in Manhattan, and often strikes during the late teens or early 20's.

"Since lupus commonly strikes the younger population, often making them sickest when they need to feel their best, they need extra support," said Dr. Furie, who is also an assistant attending physician at the Hospital for Special Surgery in Manhattan.

Astrid Reid, a social worker at the North Shore center, said the patients can help each other while they are going through a crisis. "And once those resources are used up, we can step in and help," she added. "I think the lupus patient is very needy. Their lives can be totally interrupted and they need help getting organized."

But the value of a center specializing in treating only lupus patients is questionable, some experts say.

Dorothy Goldstein, director of medical affairs for the New York Arthritis Foundation, said: "The lupus patient cannot lose by getting cared for at a lupus treatment center. But if you go to a good hospital that has a rheumatology clinic instead of a separate lupus clinic, or to just a good physician that's interested in lupus, then I'm sure the care can be equally superb."

And according to Miss Goldstein, bringing lupus patients together in one setting may even have a negative impact. "It can be very scary for the patient," she said. "If they see other patients that are very sick, they might become afraid of what may happen to them."

But Mrs. Engelhard, of the Lupus Foundation, said: "Sure. Many patients will get scared. That's the real world. But seeing people worse off than you may also give you strength."

Many Long Island hospitals, including the Nassau County Medical Center in Mineola and the Long Island Jewish Medical Center in New Hyde Park, handle lupus patients in their rheumatology clinics.

According to Dr. Seymour Cohen, vice president for education and research at Long Island Jewish, "I don't think the quality of our care is any different nor is anything different being done for the patient."

But another lupus patient, 29-year-old Mary Lee Dykes of Rosedale, Queens, is glad that the North Shore center exists. "I was used to working on my feet all day and taking care of my 4-year-old daughter before I got lupus," she said. "Sometimes I get terribly upset and feel like I'm going to have a breakdown because I no longer have a job and find it hard to take care of my daughter. When I feel like that, I'm glad I have this place to come to."

Besides helping patients gain inner strength by sharing their problems with others, physicians who treat lupus hope such specialized centers will help the medical profession gain knowledge.

Lupus has been recognized since the fourth century B.C., when Hippocrates first described it. But science has not made tremendous strides in understanding or treating the disease, according to Dr. Furie.

The cause of lupus is not known. The current therapy is medication to help relieve pain and inflammation, avoiding the sun, which can trigger a flare-up, and adequate rest.

"Part of the reason for generating a patient population is for us to generate clinical rearch on lupus," Dr. Furie said in support of lupus treatment centers. "If we can look at all the complications of the disease and study the side effects of the current therapy, we can learn more about how to treat it in the future."

According to Dr. Lahita, a rheumatologist and researcher, "Once we understand lupus, there may be even be something in there for the AIDS patient as well."

For several years he has been studying three hypotheses of the cause of lupus. One is that certain drugs, such as those for hypertension and irregular heartbeat, may somehow disturb the immune system, altering it to cause the body to produce antibodies against its own tissues.

He has also studying whether susceptibility to the disease is inherited. "Lupus seems to be passed down among families, but it can skip generations," he said.

But studying the role of hormones in lupus has been the most exciting research so far, he said. "It's obvious that there's some clear predisposing factor in women, possibly an increase in estrogen - the female sex hormone - or a decrease in androgen -the male hormone - that feeds the disease," Dr. Lahita said. "Presently it appears to be a little of both. It may be that a very vital ratio of hormones maintains the immune system."

If a difference in the metabolism of the sex hormones contributes to susceptibility to lupus, said Dr. Lahita, then it is possible that the sex hormones may influence other diseases of the immune system, such as acquired immune deficiency syndrome, in which the body loses the ability to fight illness. If this turns out to be the case, then by changing the character of certain key cells of the immune sytem with sex hormones, physicians may be able to alter the course of a disease like lupus or AIDS.

"It's nice to hear that there's a concerted effort to treat lupus patients in a uniform manner under one roof," he said. "But some great breakthroughs are going to have to come soon. Treatment centers can't thrive until we have treatment."

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