Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=225800
Story Retrieval Date: 7/26/2014 12:06:30 AM CST

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Tammy Thueringer/MEDILL

Arnie Witzke, wearing bib 106, the same number as his fire marshal call sign, poses for a picture with his wife, Patricia, after the two finished the 3rd Annual Cystic Fibrosis Stair Climb.

 


Step by step, one man is beating the odds of a life-threatening illness

by Tammy Thueringer
Nov 14, 2013


300 lasalle

300 North LaSalle

Hundrends of climbers conquered 58 flights of stairs at this skyscraper at 300 N. LaSalle St. on Sunday, raising more than $120,000 for the Cystic Fibrosis Foundation.

 

Most people who need to get to the top of a skyscraper would take the elevator.

But the hundreds gathered at the of bottom 300 N. LaSalle St. on Sunday morning instead made it to the 58th floor one flight of stairs at a time.

It was the third time in as many years 58-year-old Arnie Witzke took part in the Cystic Fibrosis Stair Climb to raise money in the fight against the life-threatening illness.

But that’s not what makes Witzke unique.

“My parents had me in 1955 and I was in the hospital, in and out a lot,” Witzke said.

“Three years later my sister was born. She was very sick. They did a sweat test on her. They decided because of my previous history they had to do one on me.”

Both tests came back positive. Witzke and his sister had cystic fibrosis.

Today, about 30,000 Americans live with the disease that causes sticky mucus to build up in the lungs and other organs, leading to infections, digestive problems and, typically, death in young adulthood.

Witzke’s diagnosis came during a time when children born with the disease often died before reaching elementary school, including his sister, Roxanne. She died the year after she was born.

By all accounts, Witzke has lived an atypical life for someone living with a disease that can make breathing difficult. He took up scuba diving and skiing as hobbies and worked as a firefighter until he got into a fire and lost the seal on his breathing apparatus, causing him to inhale smoke. That’s bad enough for someone with good lungs; perilous for someone with bad lungs.

“I got really into my job, to the point where job was first, health was second,” Witzke said. “It was because of that that I had my first real major exacerbation with my lungs and from that point on, my whole outlook on CF changed.”

He joined a young adults group called the Chosen Few, all of whom had cystic fibrosis, but the group was forced to disband when it was discovered CF germs can be passed between patients, causing serious respiratory illness and can even lead to death.

Witzke’s involvement with cystic fibrosis groups didn’t start until after his parents passed away.

“Because of my sister there was just something not there, there was a disconnect between cystic fibrosis and them,” Witzke said.

Several years after joining the Chosen Few he became involved with the Cystic Fibrosis Foundation, which works to control the illness and find a cure for it.

Witzke started by doing talks at events for parents of children with the disease. He still remembers his first one.

The firefighter turned fire marshal for the North Maine Fire Department in Des Plaines started by giving his usual safety talk, but then said something that shocked everyone in the room.

“I tell them I have CF and you can hear a pin drop.”

Today, the median age of the CF patient is 37, but Witzke still inspires hope in those living with the illness and their loved ones.

“It’s so important for the families to see Arnie, who is 58 years old, planning retirement, to know that their children will have a long and healthy life,” said Molly Riley, executive director of the Greater Illinois chapter of the Cystic Fibrosis Foundation.

But hope can only get you so far. Like so many other things in life, finding a cure for CF comes down to money.

“We’re so close,” Riley said. “The science is here, we have it, we know what we need to do, we just need to raise the money to get us across the finish line.”

The finish line is a cure for CF or at least a drug to control the effects of the illness and improve life quality for those living with the disease.

Last year, about 4 percent of CF patients got closer to the finish line than ever before when the Federal Drug Administration approved Kalydeco, a twice-a-day pill that works to correct a specific genetic defect.

Most patients taking Kalydeco have experienced remarkable improvement in lung function and have gained weight, normally a difficult task for those with CF.

But the Foundation and those affected by the illness aren’t celebrating yet. More work needs to be done.

There are two drugs in clinical trials right now. If all goes well, Riley said there could be a control for about 90 percent of the CF population by as soon as 2017.

Scientist identified the gene that causes cystic fibrosis in 1989. Since then, the Cystic Fibrosis Foundation has spent millions to develop drugs to treat the disease, including a $75 million investment in Kalydeco.

“We get no government funding,” Riley said. “We are completely dependent on money raised from individuals, from the family members of someone who they love with CF or the kindness of people who don’t have someone directly affected by the disease but believe in our mission and want to be a part of curing or controlling a disease.”

Witzke’s goal for Sunday’s climb was to beat his time from last year.

He didn’t quite make it, but he still considers the climb a victory and he as a message for others fighting the illness.

“Follow your dreams, don’t let the doors be closed, open them, don’t take no for an answer and keep up,” Witzke said. “Right now it’s an exciting time to be looking at all of the research.”