Lois McFarland - Special for the Scottsdale (Arizona) Republic (7 March 2005)

SCOTTSDALE, ARIZONA - Imagine constantly living with dry eyes, a dry mouth and throat, a dry cough, suffering from hearing problems and having a difficult time speaking.

That's what it's like living with Sjögren's, an autoimmune disease that attacks moisture-producing glands. About 4 million Americans suffer from the non-fatal syndrome, which is often difficult to diagnose. About 90 percent who suffer from Sjögren's syndrome are women.

"Sjogren's (pronounced shoh'-grihns) is the most unknown common disease," said Steven Taylor, national executive director of Sjögren's Syndrome Foundation in Bethesda, Maryland. "Women's symptoms are being ignored and misdiagnosed, and that is why increasing awareness is a main focus of the Sjögren's Syndrome Foundation. This disease cannot be ignored any longer. The women affected need to be taken seriously, diagnosed earlier and treated with compassion."

Taylor's remarks were made in advance of his speaking appearance in Scottsdale before the Phoenix-area Sjögren's Syndrome Support Group.

"Autoimmune diseases, including Sjögren's, affect over 22 million Americans," Taylor said. "Congress is finally taking notice. Support of various legislation initiatives is rising and our voice is being heard on Capitol Hill." This year, the foundation will award three $35,000 fellowship grants to research projects that focus on clinical or basic research into the cause, prevention, treatment and/or cure of Sjögren's.

Public awareness also is the goal of Lois Peach, who founded the Phoenix-area support group in 2000. A registered nurse, Peach also has Raynaud's (rayh-nohds') Disease, which causes some areas of the body -- such as fingers, toes, ears, and tip of the nose -- to feel numb and cool in response to cold temperatures or stress. Raynaud's can accompany Sjogren's.

"Public awareness is so important," Peach said. "I spoke to a group of schoolteachers this past year and asked how many had heard of lupus. Everybody raised their hands. Then I asked how many had heard of Sjögren's and two raised their hands. I told them Sjögren's is more prevalent than lupus and both are autoimmune diseases."

Peach suffered from Sjögren's but was being treated for Raynaud's before moving to Arizona in 1969. "I wasn't diagnosed because doctors didn't know what it was," she said.

Peach sees a rheumatologist four times a year and says "practically every Sjögren's patient ends up going to a rheumatologist for diagnosis."

Her rheumatologist, Dr. Kelly M. Sems, has many Sjögren's patients and believes that people are becoming more aware of the disease.

"Sjögren's is very difficult to diagnose," Sems said. "Blood tests aren't always positive. The way to definitely confirm Sjögren's is with a lip biopsy."

Periodic checkups also are important because of the increased risk of developing lymphoma, cancer of the lymph nodes. "It's higher than the general population and so important to monitor for swollen lymph glands," Sems added.

Peach, however, doesn't dwell on her illnesses and is constantly giving encouragement to her support group. "To be a support group leader, you have to be positive," she said. "I don't make a big deal about what I have or what I've been through because I'm here to help people. I feel I've been blessed even though I've had a lot of illness. I'm thankful about what I'm doing and count the day lost when I have not done something good for someone else."