When Canal Winchester resident Jessica Legg-Bagley began suffering kidney pains, she thought it was a simple infection or perhaps, at worst, diabetes.
After several rounds of tests, she eventually learned that she suffered from focal segmental glomerulosclerosis -- FSGS -- one of a handful of rare nephrotic syndromes that have no cure and no standard treatments.
Legg-Bagley hopes to change that and is working with the city and the NephCure Foundation to bring a new charitable event to Canal Winchester to raise research funds.
The NephCure Walk will take place at 10 a.m., Saturday, Sept. 7, starting at Guiler Park and following a 2.8-mile route through the city.
According to Legg-Bagley, she's already very grateful to her family for their support and fundraising efforts since she was diagnosed in January 2012; now she's also very thankful for the support of the community.
Since being diagnosed, she said, she has had several periods of disability and has pursued a number of treatments. She is currently on her fifth combination of daily drugs.
"There's no set treatment or cure, so going through these different drug combinations has at times made me much sicker than I already was," Legg-Bagley said. "I was misdiagnosed at first, too, which happens to most people with this disease, because there isn't a lot of awareness of it, even with the doctors."
Legg-Bagley's personal experience with the disease and the lack of awareness or treatment for it led her to connect with the NephCure Foundation, an organization committed to finding a cure for nephrotic syndrome and FSGS.
According to foundation spokesman Donald Ortale, nephrotic syndrome is the second-leading cause of kidney failure in children, with more than 5,400 new diagnoses a year. Even a kidney transplant is no guarantee of a cure: "Approximately 1,000 FSGS patients a year receive kidney transplants," Ortale said. "However, within hours to weeks after a kidney transplant, the FSGS returns in about 30 to 40 percent of these patients."
The Sept. 7 walk in Canal Winchester is the first of what organizers hope will become an annual event. Registration opens at 9 a.m. at the shelter house at Guiler Park, 180 Groveport Road. The walk itself starts at 10 a.m.
There is no fee to register or participate, but walkers who raise $100 or more will receive a free T-shirt.
"As advanced as medicine is today, there is no known reason why this occurs in the kidney and therefore no cure," Mayor Michael Ebert said. "We're hoping to help change that starting here in Canal Winchester."
For more information about FSGS and Nephrotic Syndrome, to make donations or to register for the first Canal Winchester NephCure Walk, visit nephcure.org/walk.