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MASON CITY | This month, Mason City will serve as worldwide hub in a fundraising effort for an incredibly rare disease.

Bob Rodgers, who will turn 66 in October and is a Vietnam veteran, is one of three people in the state of Iowa to have Erdheim-Chester Disease.

“It’s not a disease that many people have heard of,” Bob said.

He and his wife, Phyllis Rodgers, live in Mason City. They will host the ECD Angel of Hope Park-to-Park 5K Fun Run on Sept. 19 to raise funds and awareness.

The run coincides with the inaugural ECD Awareness Week, Sept. 14-20.

Satellite runs will be held around the world — people who register online can receive a T-shirt, ribbon and wristband — but the "hub" will be the event in North Iowa. Australian Julie Mileto, who lost her father to the disease in May, will be one of the far-flung runners.

Another is Kathy Brewer, whose husband was not diagnosed until an autopsy was performed following his death in 2007.

Proceeds from the Mason City run will go to the Erdheim-Chester Disease Global Alliance. The group helps fund research and serves as a support group for patients, doctors and caregivers.

The organization was founded by Brewer, who Bob describes as an "amazing satellite runner."

Each year, the alliance has a gathering of doctors, patients and caregivers in a different city. This year the Rodgers will travel to Houston in October for the alliance gathering. The gathering will be in Paris in 2016. 

Phyllis said the members of the small, close alliance are family to them. She belongs to a caregiver chat that gets together twice a month on Facebook.

ECD affects many different organs. The disease causes excessive production and accumulation of histiocytes, cells whose normal function is to fight infections. Those cells take over loose connective tissue in the body, causing it to thicken.

Bob was diagnosed in 2006 after suffering a knee injury. After area doctors couldn't explain his strange X-rays, he says he was the fifth person to be diagnosed at Mayo Clinic with the disease.

ECD is characterized by bright, white glowing spots on X-rays. 

Doctors are often unable to diagnose it because the condition is so rare. The ECD Global Alliance reports 287 patients worldwide and 112 in the U.S. 

Bob showed no symptoms until he was hospitalized in 2013.

He had debilitating fatigue and was sleeping close to 18 hours a day. The disease has caused balance issues, preventing him from driving a vehicle. He also struggles with cognitive thinking. 

The disease causes lesions in his lungs and brain, and his kidneys are covered in histiocytes.

Bob is on his second drug to slow the disease's progression. The first had "terrible" side effects; the second is currently in a trial phase for use in ECD cases.

Veterans Affairs assisted in securing a prescription of Vemurafenib.

Vemurafenib is an oral chemotherapy, typically used to treat late-stage melanoma. About one-half of ECD patients have a Braf mutation, as do melanoma patients. Vemurafenib has been effective for both groups, according to research. 

As far as classification of the disease, researchers have debated and it has changed a few times since his diagnosis.

“When I was diagnosed, they called it a metabolic bone disease,” Bob said. “Then it went from that to an autoimmune system disorder. Now, they are leaning very heavily to cancer of the blood like a leukemia.”

Bob feels fortunate to help others suffering from the same disease.

“I am very lucky,” Bob said. “Since 2006, to even be alive, that’s big.”


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