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Shedding Light on a Rare Disease : Woman Hopes O.C. Group Will Increase Awareness of Life-Threatening Effects of Excessive-Growth Illness

December 27, 1992|DENNIS McLELLAN | TIMES STAFF WRITER

NEWPORT BEACH — Jill Meer doesn't avoid mirrors, but they are a constant reminder that her appearance has changed. "I gave up worrying about my looks," she says. "I had to. It was hurting too much."

In addition to a puffy and "fuller" face, Meer's ring size has gone from a 7 to a 9 1/2 and her feet from 7 1/2 narrow to 9 1/2 medium. Nearly 20 years after graduating from high school, she has grown 1 1/2 inches.

Meer's condition is caused by acromegaly, a rare and potentially life-threatening disease brought on when a tumor on the pituitary gland creates an overproduction of growth hormone. Acromegaly is characterized by excessive skeletal growth and soft tissue enlargement, the most obvious symptoms being the growth of hands, feet, nose and jaw.

The biblical giant Goliath probably provided the first description of the disease, which is also known as gigantism when the tumor appears before the end of puberty and dramatic bone growth occurs; Carel Struycken, the 7-foot-tall actor who played Lurch in the recent "Addams Family" movie, is an acromegalic.

The disease strikes three to four people per million each year. So far it has been diagnosed in more than 40,000 Americans, typically not until eight to 10 years after the onset of the tumor. But many cases remain undiagnosed. And if untreated, the disease can cause diabetes, heart disease, hypertension, kidney-related problems, cancer, blindness, arthritis and other serious conditions.

Meer, however, feels fortunate.

Her pituitary tumor was discovered and surgically removed nine years ago. That halted further growth. But as often happens, Meer's tumor returned last year.

"I was devastated," says Meer, 37. "It made me very frightened because I didn't understand how or why it came back, but with the support group now I understand it could always be with me."

The support group is the Acromegaly Network Assn., the world's first nonprofit organization dedicated to supporting acromegaly patients and their families, educating both the public and the medical community and funding research for the early diagnosis and treatment of the disease.

The group, which was formed early this year, holds monthly meetings at Cedars-Sinai Medical Center in Los Angeles. The goal of the 100-plus member association is to become a worldwide network: Meer is starting an Orange County chapter, and other chapters are opening in Texas and Canada.

"The importance of this group is that today we have the means of treating them, and they don't die," said Dr. Shlomo Melmed, director of endocrinology and metabolism at Cedars-Sinai. "The association provides them with social and psychological support, access to medical options and information about the latest drug trials."

Says member Struycken, whose acromegaly was diagnosed two decades ago when he was 20: "This group definitely serves a very important function. What I've always noticed going through the medical mill is that there are people--even endocrinologists who should know their stuff--who are really very uneducated as far as acromegaly is concerned."

Melmed, one of the Acromegaly Network Assn.'s founding medical advisers, acknowledges that most people are unfamiliar with the disease.

"People know about cancer, they know about heart disease, lupus and diabetes, but they don't know about the rare diseases," he said. "It doesn't matter how rare that disease is, for that individual patient it is the No. 1 concern. And there are thousands of patients with acromegaly in this country."

Indeed, for Meer, attending the association's meetings have provided blessed relief.

"I've been carrying this weight alone for nine years," she says. "Until I found this group, I felt embarrassed to have it. I felt very ugly. I felt very different."

Meer remembers joking with her mother a decade ago, ' "Gosh, Mom, you're shrinking.' She measured me on the wall like when you're a kid, and she said, 'You're 5-(foot)-5 and a half.' I said, 'Oh, mom, don't be silly. I'm 5-4.' "

Meer discounted the increase in height at the time, figuring "maybe we measured wrong all along." But looking back, she says, "I see a lot of indicators (of the disease) that I didn't understand."

Meer's acromegaly wasn't diagnosed until after she went in for her annual checkup with her gynecologist in 1983.

At the time, she was recently divorced and, she recalls, "I jokingly said, 'I've got to tell you this divorce is taking a toll on me. I just feel wiped out all over. Look at my hands, they're swollen.' And my feet hurt like I'd walked all day shopping. They were very tender."

Her head felt equally tender. And she was experiencing migraine headaches, arthritic symptoms in her joints and severe fatigue.

"Just getting through the day was difficult," says Meer, who recalls her gynecologist telling his nurse, "It sounds like acromegaly or rheumatoid arthritis to me."

That fact that her gynecologist even recognized the symptoms of acromegaly is unusual.

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