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Posted: April 12, 2017

Last Updated: November 14, 2017

Alliance notes 40 years of helping lupus patients

By Annette Jiménez/EMC

The Lupus Alliance of Upstate New York has been working to educate and support patients with the autoimmune disease for four decades.

In honor of that milestone, the alliance will host a benefit concert next month to raise money to boost those efforts in the Rochester region.

For a person with Lupis, such support is a critical piece in managing the disease, said Janell Rosati, a Buffalo woman who was diagnosed six years ago at the age of 33.

“It is important for people (with lupus) to not feel alone, for people in the community to better support them,” said Rosati. “For mental health, too, it’s important. Because when a person is stressed out, the disease is going to flare up too. That’s how it goes.”

Lupus is a chronic, autoimmune disease that can cause inflammation in any organ of the body and affects more than 1.5 million in the United States, according to information from the alliance (lupusupstateny.org). More people suffer from the autoimmune disease than the number of people diagnosed with AIDS, cystic fibrosis, cerebral palsy, sickle cell anemia and multiple sclerosis combined, said Judith Christian, the alliance’s executive director.

Symptoms include aching joints, strong sensitivity to sunlight, butterfly rash on the upper part of the face, extreme fatigue, low-grade fever, sores on the mouth (particularly on the roof of the mouth), dry mouth, extreme sensitivity to cold and chest pain from taking deep breaths.

More than 90 percent of lupus patients are women ages 15 to 45, according to information from the alliance. Hispanic, African-American, Asian and Native American populations are two to three times more likely to have lupus than other groups, according to the organization’s website.

The theory is that there are hormonal and genetic factors that cause the prevalence among those groups, said Dr. Allen Anandarajah, a rheumatologist at the University of Rochester Medical Center who also directs the early arthritis clinic.

“One of the other most interesting things is that lupus is more common in African-Americans than Africans,” he said. “The question (becomes) is that because they don’t diagnose that in Africa, or is it the stress of life of living in the United States?”

In Rochester, a study he published also found that Hispanics and African-Americans in the city of Rochester were hospitalized more often than other populations, he said.

“Is that because they have more severe lupus, or they’re not looked after well, or they’re not looking after themselves well?” he said.

To help answer those questions, Anandarajah recently obtained a grant from the Greater Rochester Health Foundation to create a program that will begin in July.

The program will include a nurse coordinator and patient peers to educate patients and physicians, he said. Anandarajah also will hold focus groups to find out what the medical community is doing well and not well when it comes to treating lupus patients. Conferences for primary care physicians also will be held to improve diagnosis rates for patients, he added.

“It is very hard to diagnose because there are so many symptoms, and it can mimic other diseases,” noted Rosati. “It can take five to seven years.”

Trying to decipher whether a person should suspect lupus is made even more difficult because symptoms are so varied and often don’t happen at the same time, Christian explained. There is a urine test to check for antibodies produced in response to lupus, but results show false positives in 30 percent of cases, Christian said.

Rosati said she was fortunate to have received a relatively quick diagnosis, although she realizes she had been experiencing symptoms for most of her life. Following a routine physical, the white cell count in her blood was elevated and cancer was suspected at first. Because of a potential nine-month delay in seeing a hematologist, a relative got her an appointment at Roswell Park Cancer Institute in Buffalo and cancer was ruled out. Her own research led her to believe it was lupus, and she again faced a potential nine-month wait for a rheumatologist. Her primary care doctor, however, was friends with a doctor starting a new rheumatology practice, and that physician diagnosed her as having lupus.

“I was scared to death,” she said. “I’m going to have to take all these meds, I can’t go outside. I’m going to die. … In general, people need to be educated on how to support other people.”

Because no two cases of lupus are the same and the path of the disease can change at any given moment for a patient, Christian said the alliance strives to offer meetings, orientations and even virtual gatherings to help as many people as possible and as often as needed. Videos on the alliance’s website also provide information, she noted.

Currently, the Buffalo-based alliance also has two paid staff members and serves 33 counties from western New York to the Albany area, said Christian.

“The lupus community needs daily support, which is a significant challenge we face as an organization,” she said.

EDITOR’S NOTE: The Lupus Alliance of Upstate New York will host a benefit concert on May 7 from 3 to 6 p.m. at the Flour City Station, 170 East Ave., Rochester. Tickets are $20 for adults and $10 for children ages 5 to 10.

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