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Sjogren's, a disease you probably can't see or pronounce, wreaks havoc on women

The autoimmune disease usually starts with dry eyes and dry mouth, but can progress from uncomfortable to life-threatening. Most patients are women, among them tennis star Venus Williams.

Lisa Faricelli, shown with her husband, Jack, was diagnosed with Sjogren's syndrome in 2009.
Lisa Faricelli, shown with her husband, Jack, was diagnosed with Sjogren's syndrome in 2009.Read moreStacey Burling

It took 10 years for Lisa Faricelli to get an explanation for the symptoms that were making her miserable.

A former "superwoman" of a middle-school teacher, she was exhausted and had "terrible tingling, terrible burning" in her hands and feet. Her reflexes were impaired. She lost 20 pounds.

"I'm seeing doctor after doctor, week after week, and I'm not getting anywhere," the 66-year-old Lumberton woman said.

In 2009, she learned she has Sjogren's syndrome, an autoimmune disease that attacks moisture-secreting glands throughout the body. The dry eyes and dry mouth that are usually the first symptoms came later for her.

She now has what is considered a severe case that is affecting her internal organs.

The saddest part, her husband, Jack, said, is that she can't even cry about her plight. She can no longer make tears. Without them, Lisa Faricelli said, crying is physically painful, not cathartic.

"That's an emotional outlet, and you don't have that anymore," she said.

Faricelli was among nearly 500 people diagnosed with Sjogren's who attended the Sjogren's Syndrome Foundation annual patient conference recently in Cherry Hill. The meeting was a chance to catch up on medical developments, commune with others with the same symptoms, and raise awareness for a disease that is often invisible and hard to pronounce. (Sjo sounds like show.)

She is especially interested in raising awareness of the disease. So far, there are treatments only for individual symptoms, not underlying causes.

"It's a very horrible disease and people need to know that it's very difficult to live with, and it's very hard on your family and your friends, and it's very hard for you," she said.

Steven Taylor, chief executive officer of the foundation, said nine companies are conducting trials for the condition, but no new treatments are imminent.

Nonetheless, he said diagnosis is important because it helps doctors keep watch for the most significant consequences and try to prevent them.

Frederick Vivino, a rheumatologist at Penn Presbyterian Medical Center and director of Penn Sjogren's Center, said the syndrome is named after a Swedish ophthalmologist. Though others had noticed patients who suffered from dry tissues, Henrik Sjogren was the first to recognize the relationship between the three symptoms that typically prompt patients to seek medical attention: dry eyes, dry mouth, and arthritislike joint pain.

Sjogren's affects about 1 percent of the population. People of any age can have it, but about 90 percent of diagnosed patients are female. They are often middle-aged and older. Tennis player Venus Williams is a high-profile Sjogren's patient.

Most people, Vivino said, stay at stage 1, where dry eyes and mouth, fatigue, and muscle or joint pain are the main symptoms. These alone can be disabling. Dryness can cause serious eye damage and tooth decay.

"The arthritis by itself can be severe and disabling," said Fabian Mendoza, a rheumatologist at Thomas Jefferson University Hospital, who did not attend the conference.

About 25 percent develop damage to internal organs, such as lungs and kidneys, Vivino said. Five percent get cancer, most often non-Hodgkin's lymphomas.

Many of the symptoms of Sjogren's are familiar to aging women. Dry skin, eyes, mouths, and vaginas are common.

"It mimics menopause," Taylor said. "That's why diagnosis takes longer."

Thirty million Americans have dry eyes, often because of aging, medications, computer use, or environmental irritants, he said. Of those, about four million have Sjogren's. Doctors confirm telltale antibodies through blood tests or biopsies of salivary glands in the mouth.

People with Sjogren's tend to have more severe symptoms than those who are just getting older. The average age at diagnosis, Taylor said, is 40.

One of the foundation's goals is to reduce the time it takes people with Sjogren's to get diagnosed. In 2012, it took an average of six years. That was down to three years in 2016.

Janet Church, of Sonoma, Calif., said she had problems -- frequent sinus infections, dry eyes, and mouth, joint, and muscle pain -- for 20 years before learning she has Sjogren's. Church worked in tech and is now the cofounder of a software company. She needed to sleep 15 to 16 hours a day, a particular hardship in a demanding field like hers. Her eyes got so dry that the skin at the corners would split.

Medications have helped. She's also learned to manage her time and stress better.

Many people with Sjogren's are hurt when others say they don't look sick. It doesn't bother Church. "I'm very thankful that I don't look ill," she said. "If I looked like I felt, that would even limit my life more."

Faricelli doesn't want to depress people by saying how bad she feels, but it does bother her a little when people say she looks good. "Inside, I'm thinking you don't know how I feel," she said. "I feel horrible."