ASHLAND — More than 1.3 million people in Ohio have chronic kidney disease. But only 11% actually know.
That’s according to the Kidney Foundation of Northwest Ohio.
Ashland resident Katie Strange — who is fighting off a rare kidney disease — is on a mission to raise awareness around the issue.
It’s why both Gov. Mike DeWine and Lt. Gov. Jim Tressel proclaimed May 14 as IgA Nephropathy Day. The leaders signed the proclamation thanks to Strange’s advocacy through the IgA Nephropathy Foundation.
The Ashland Middle School teacher, at 37, discovered her symptoms of rashes and bloody urine had a name: IgA Nephropathy. It’s also called Berger disease.
The condition is a rare form of chronic kidney disease that happens when a germ-fighting protein called immunoglobulin A (IgA) builds up in the kidneys and causes swelling. Over time, inflammation makes it harder for the organs to filter waste from the blood.
Strange could need dialysis or a kidney transplant in the next decade. The IgA Nephropathy Foundation estimated somewhere between 20% and 40% of people with the condition will develop end-stage kidney disease and require dialysis or a transplant.
Strange visited Washington, D.C. in September to participate in Hill Day, an organized effort to meet with members of Congress and other officials to advocate for causes and legislation.
She met with six congressman in Ohio and Kansas to advocate the passage of two bills that would lead to more research into rare kidney diseases and better outcomes for existing patients.
Continuing the advocacy
Since then, she’s advocated for IgA Nephropathy Awareness Day, been recognized at two Guardians games in Cleveland and spoken to local legislators about Ohio House Bill 122.
The bill, first introduced in February, provides tax credits to private employers that offer paid leave to living organ donors.
I kinda won’t let it go.
katie strange
“There’s a law on the books already that covers state employees, but there’s nothing for private employers,” Strange said.
She said living donors who donate kidneys, livers, pancreases, intestines, lungs and bone marrow could be unable to work for weeks. If that kind of time off isn’t supported, it might mean fewer people acting as donors.
Strange is also staying involved in raising awareness through webinars. She has one coming up on Sunday. And her boss at Ashland Middle School offered to recognize IgA Nephropathy Awareness Day by encouraging students and staff to wear the foundation’s colors of red and white.
“I kinda won’t let it go,” she said with a chuckle. “I’m just trying to keep people talking about it.”