Sjogren's patients aim to get the word out

Sjogren's Syndrome may not be a household name, but those who suffer from the chronic autoimmune disease aim to make it known to Long Islanders come March.
   
East Meadow resident Lynn-Anne Spitzer, a volunteer for the Sjogren's Syndrome Foundation is reaching out to the community to participate in an awareness event on March 20. The event is the Long Island Area Sjogren's "Walkabout," which it will be held at the Roosevelt Field Mall  — registration begins at 9 a.m. and the walk steps off at 9:15 a.m. Participants should enter through the North entrance near J.C. Penney's. The event also features an "autoimmune health fair."
   
Spitzer, 54, has been diagnosed with Sjogren's Syndrome for about 17 years.

   
"It is very common even though most people have never heard about it," she said.
   
Statistics show that about four million people in the United States are affected by the disease, and nine out of 10 patients are women.
   
Sjogren's is a chronic autoimmune disease where the white blood cells attack the moisture-producing glands. According to statistics, about 10 percent of its victims ultimately develop Lymphoma, a form of cancer. Two years ago, Spitzer was diagnosed with non-Hodgkin's lymphoma.
   
Often, patients who have Sjogren's may not be diagnosed for it for several years. Patients attest that those numbers are due to a lack of awareness.
   
"Apparently, it takes many years for people to be diagnosed," Spitzer said. "Many times it is missed or the group of symptoms is not put together by the doctor."
   
A multitude of symptoms arise from Sjogren's and affect individuals in different forms and levels. Some symptoms include arthritis, muscle pains, chronic fatigue and numbness. It could potentially cause dysfunction of many organs, including the kidneys, lungs, liver and pancreas. 
   
The hallmark symptoms of Sjogren's are dry eyes and dry mouth, which are caused by damage to the glands that produce saliva and tears. Patients often have to drink water constantly, use eye drops and artificial tears, as well as anti-inflammatory drugs.
   
"You learn to kind of cope with it, and live with it," said Spitzer, who added that has to see specialists on a regular basis.
   
The disease was named after Swedish physician Henrik Sjogren, who first identified the disorder in 1933.
 
For more information about Sjogren's Syndrome and how you can participate in the Long Island Walkabout, call the Sjogren's Syndrome Foundation at 1 (800) 475-6473 ext. 217 or attend the Walkabout at Roosevelt Field Mall on March 20.