BY JACKIE STRAWBRIDGE
It took doctors several days and a slew of tests to diagnose Queens resident Fran Tsimoyianis’ 16-year-old son with lupus.
When Tsimoyianis heard the diagnosis – stage four lupus – she feared the worst for her son.
“I didn’t know anything about lupus,” she said, thinking that, like some cancers, lupus at stage four meant death.
However, the doctors told her that lupus works differently than cancer and there are more stages.
“They could get it under control,” Tsimoyianis said. “There was hope.”
Lupus is a chronic, non-contagious disease that involves a malfunctioning immune system. It can affect any part of the body. According to the Lupus Foundation of America, around five million people worldwide have a form of lupus. The disease tends to strike women between the ages of 15 and 44, however there are men, children and teenagers – like Tsimoyianis’ son – who have lupus as well.
Tsimoyianis became involved with the Lupus Foundation of America soon after her son was diagnosed. About a year and a half after she first became aware of the organization, they approached her regarding the Walk to End Lupus Now. This Saturday, Tsimoyianis will walk for the seventh year, to raise awareness about the disease and fundraise for research.
This year, Joan Pendleton will serve as the New York City Walk Manager for the second time.
“The Walk is first and foremost a fundraiser to raise urgently needed funds to support Lupus Foundation of America programs in research, education, advocacy and direct services to patients and their families,” she said.
“Lupus is a cruel and mysterious disease, which makes it very difficult to diagnose and treat,” Pendleton added. “Lupus is like a snow flake, it presents itself differently in each individual, so there needs to be an arsenal of medications [to treat the disease].”
For Tsimoyianis, participating in the Walk provides an opportunity to combat lupus in a concrete way.
“I’m not a researcher, I’m not a doctor,” she said, “There’s nothing I can do there. But I can walk, I can raise money, and I can tell people about it.”
Tsimoyianis said she also hopes to help those affected by lupus who do not have the same support system that was available for her son. The high school he attended, Holy Cross in Flushing, was “amazingly supportive,” according to Tsimoyianis, as were friends and family in the community.
Neighbors and coworkers were “cooking for us, doing whatever they could,” Tsimoyianis said. “We’re luckier than most. Now that I’m involved with the Lupus Foundation of America, I meet people who don’t have support systems like this.”
Tsimoyianis said she wants these people to know, “there are people out there who can support you and help you. This walk brings those people together.”
The Walk to End Lupus Now will be held this Saturday at the South Street Seaport. To learn more, visit www.lupus.org/newyork/events/entry/walk-to-end-lupus-now-new-york-city.
Reach Jackie Strawbridge at (718) 357-7400, Ext. 128, firstname.lastname@example.org or @JNStrawbridge.