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Women with little-known disease work to raise awareness

By BETH N. GRAY
Published March 22, 2007

SPRING HILL - Sjogren's syndrome. Although identified back in 1933 by a Swedish physician of that name, the affliction remains so obscure that many physicians today even ask, "What?"

Dana Moreno, 42, and Connie Roberts, 44, both of whom had to give up professional careers because of the syndrome, have made it their mission to educate doctors - and everyone else - about Sjogren's pronounced SHOW-grins, an autoimmune deficiency that debilitates through myriad avenues: the central nervous system first, then on to major organs and the lymphatic system.

The two women have prepared a resolution that the Hernando County Commission is expected to adopt on April 3, proclaiming April Sjogren's Syndrome Awareness Month.

It was so proclaimed by the U.S. Congress several years ago. Moreno and Roberts also have been invited to Tallahassee when Gov. Charlie Crist is tentatively scheduled to sign a similar proclamation for the state.

According to the Sjogren's Syndrome Foundation in Bethesda, Md., the affliction "is a serious, chronic autoimmune disease in which white blood cells attack and destroy the body's moisture-producing glands.

"Hallmark symptoms of Sjogren's syndrome are chronic dry eye, dry mouth and fatigue."

But that's only the tip of the iceberg, say Moreno and Roberts, who are living with far worse effects.

Moreno was first stunned with trigeminal neuralgia, a rare condition attacking a nerve in the head that leads to the teeth, cheek and forehead - "excruciating pain," she said.

Now, she has inflammation of the vascular system, fibromyalgia (an arthritis of the muscular system), demyelinating disease of the central nervous system and most recently was diagnosed with hepatitis.

Moreno opens a folder, a couple of inches thick with doctor's reports, diagnoses and her own research.

"This is the agony of Sjogren's," she said.

Roberts' medical woes began four years ago with a tingling in her face, drooping right eyelid, extreme fatigue and an ulcerated colon. She has since been diagnosed with myasthenia gravis, an autoimmune and neurological disease, and suffers migraines.

Roberts said autoimmune diseases run in her family. Foundation spokeswoman Elizabeth Cowles acknowledged, "We have seen genetic ties."

Both women had originally been told they had multiple sclerosis.

According to the foundation, "Sjogren's syndrome's symptoms are often misdiagnosed with those of menopause, rheumatoid arthritis and chronic fatigue syndrome. Left untreated, (it) can affect the gastrointestinal and respiratory tracts as well as the joints and organs of the body, including the kidneys, thyroid, lungs and liver. The average time for correct diagnosis of Sjogren's is six to eight years.

"Nine of 10 Sjogren's patients are women. The average age of diagnosis is 40-50. Sjogren's patients are 44 times more likely to develop lymphoma. Although there are treatments available to help alleviate the symptoms, there is no cure."

Roberts knows about the fatigue. She would sit on the floor to play with her 2-year-old so she wouldn't fall off a chair or the bed. She would roll over, dead asleep on the floor, in a minute.

Also from the foundation: "Sjogren's syndrome is serious, but generally not fatal if diagnosed and treated early."

Fatalities are often suicides, Moreno said her diagnosing physician told her. Moreno was a special agent for the FBI for 17 years, but her doctor told her if she didn't turn in her weapon, he would take it from her.

"All I ever wanted to be was a special agent," she said. But she had to resign when the syndrome overrode her ability to work.

Likewise, Roberts had to leave her job as a customer service representative and dispatcher for a bicycle firm.

Both women had done volunteer work with their churches, home health agency and long-term care facility.

"We were superwomen," said Roberts. But that's gone by the wayside.

"What I do now," said Moreno, "is get the word out."

She has helped to launch a support group at her church, Hope Community Bible Church in Spring Hill, for those with chronic illnesses from fibromyalgia to Crohn's disease.

"My priorities are 100 percent turned around," said Moreno, who confessed that fashion used to be of importance to her.

"God and my family (are now)," she said.

Roberts agreed. "I have a job now: my faith, my family and managing my health." Her affliction is now in drug-induced remission.

Both women are married and have 8-year-old offspring, Samuel Mareno and Samantha Roberts.

"Having a parent with chronic illness tears the family," Roberts said. Children have a hard time understanding that their mothers can't cope as others do.

But fighting on, the women urge those who have the symptoms of Sjogren's consult both rheumatologists and neurologists.

"You need to find doctors who are up-to-date," declared Roberts. A young doctor in Tampa finally told her, "Honey, you don't have MS, you have Sjogren's."

Since the foundation was formed in 1983, it has calculated that up to 4-million people in the United States are affected, more prevalent than rheumatoid arthritis (2.1 million), lupus (1.5 million) and multiple sclerosis (400,000.)

Moreno and Roberts have signed on to co-chair a Sjogren's Syndrome Support Group in Orlando.

They would like to start one in Hernando County.

Fast Facts:

Sjogren's syndrome

To learn more about Sjogren's syndrome, contact its foundation at (860) 521-2266 or its Web site at www.sjogrens.org for more information about activities, research and support groups across the country. In Hernando County, contact Moreno at 686-1440 or Roberts at 688-2007.

[Last modified March 21, 2007, 23:14:02]