By GENE KEMMETER
of The Gazette
Participants in the Cystic Fibrosis Foundation's "Great Strides Walk" on Saturday, May 4, at Pfiffner Pioneer Park in Stevens Point, realize the importance of raising funds to find a cure or even new medication for the disease.
Cystic fibrosis is a genetic disease that reportedly affects 30,000 children and adults in the United States, a number that seems small. A defective gene causes the body to produce an abnormally thick, sticky mucus, leading to chronic and life-threatening lung infections and digestive troubles.
Jed Haas of Stevens Point knows the effect of the disease. He battles it daily.
Although the disease is genetic, he and his family didn't know he had cystic fibrosis until he was almost 10 years old.
"Looking at him, you would never know anything is wrong," said his mother, Jenifer.
The family had been told Jed was lactose intolerant early in his life because his pancreas was affected by some foods, Jenifer said, so he was placed on a diet of soy products. Ironically, she said, dairy products are one of the really good things to give someone with cystic fibrosis.
During Jed's early years, the family had lived in three states, with the missed diagnosis following them around, she said.
Then, when Jed was between 9 and 10 years old, several years after the family moved to Stevens Point, he got pneumonia and treatment was unable to clear the illness. "Finally, as a last resort, we went to Marshfield (Clinic) for another opinion and within five minutes they knew what it was," Jenifer said.
As a parent, she said the identification of disease "totally changed our lives. We had to do some things to clear his lungs that were permanently damaged."
That meant the family had to learn some practices to help Jed. "The first thing, when he was 10, was pounding on his back," she said, explaining that the respiratory pounding on the back loosens the mucus, which will collect in the lungs. "The mucus is thicker and is a breeding ground for infection."
Jed said the diagnosis made him want to accomplish more, especially by participating in sports.
"I joined wrestling, which is an individual sport, one of the hardest, something that my doctor said no one with CS did," he said. "I wanted to show others that I could do it."
Jed participated in wrestling at Stevens Point Area Senior High School, winning two letters and earning an All-Conference Award at the 171-pound weight class.
Not a lot of people in high school knew he had cystic fibrosis. "My wrestling team did though," he said. Wrestling was a struggle, he said. "I would go 30 seconds without a breath."
His mother appreciated the effort he made in wrestling. "He did it because he wanted to do what was hard," she said. "He had to train harder. It was harder for him to recoup. He was really a fighter."
Jed said his battle against the disease made him try to do things. "I took on challenges that no one thought I could do."
His advice to others with the disease, he said, "is not to sell themselves short but to go for it. Don't let it get you down and don't let it get you all depressed. You can do it. Just go for it and don't let it limit you."
Those with the disease realize they have limitations, he said, adding "strive to do more."
While he needed periodic therapy, such as the pounding on his back, Jed said his family didn't harp on him about his therapy. "I could be on my own."
As a 6-footer in high school, he said he remembers his father, Ray, pounding on his back to loosen the mucus.
Funds raised through the Cystic Fibrosis Foundation have improved his life. Now, a vest developed through the foundation has eliminated the pounding. The vest inflates and deflates and vibrates, to loosen the mucus.
"I got the vest and it opened more opportunities for me," Jed said. "I could do schoolwork when I used the vest. It allowed more independence."
Now Jed lives in his own apartment while he attends the University of Wisconsin-Stevens Point. He uses the vest for a half-hour twice a day, in the morning and evening. If he's sick, he uses the vest three times each day, but he can do it while he's working on the computer or watching television."
"I try to stay away from people who are sick because I have a low immunity," he said. "I catch everything that's going around."
Jed said he takes a lot of vitamins and works out constantly, running on a treadmill to maintain his physical conditioning. "The key thing is to stay in shape," he said. "That's why wrestling was so good for me."
In addition to wearing the vest for treatment, Jed uses two nebulizers or inhalers. One is used daily. "You do that while you do the vest and it looses the mucus."
The other nebulizer contains medication, he said, "a strong antibiotic and you take it one week each month."
He also takes an enzyme to help him digest food because cystic fibrosis affects the pancreas more than the lungs. "For me, it's more in my lungs. Others have it more in their pancreas," he said.
His mother has seen the impact of the vest and the nebulizers. "All those treatments have really advanced life expectancy," Jenifer said. "They have all gone through the CF Foundation, all directly through the walks."
For those interested in the walk, which begins at 11 a.m., they can pre-register online at www.CF.com or by calling the Cystic Fibrosis Foundation's Wisconsin Chapter-Madison Branch at (608) 298-9902 or the local organization at 341-4284.