REBECCA HALE
Reverb Editor
Relay for Life is a huge event at Fredonia, and students and patrons were able to raise over $32,000 two weeks ago. However, what most students aren’t aware of is that Delta Phi Epsilon was also raising money toward a cure last month. Not a cure for cancer — a cure for cystic fibrosis.
Cystic fibrosis (CF) is not a well-known disease, but it’s one that deserves more awareness than it currently
receives.
“If people were more aware of what a CF patient goes through in their life, then they would care more about fundraising,” explained Bryan Diesenberg, a junior animation major.
“It’s not the star child of the diseases,” he said, “but CF is a special case in which you know right from the get-go that you don’t have long — you always have that black cloud over your head.”
Diesenberg suffers from cystic fibrosis, a genetic disease that attacks the lungs and intestines of 30,000 Americans and 70,000 people worldwide. Both of his parents were carriers of the gene, even though neither had the disease.
Diesenberg had a one in four chance of getting CF, and he was diagnosed while his two sisters were not. However, most people wouldn’t know it from looking at him.
Most people also wouldn’t know the kinds of things that CF patients go through.
“I can’t digest food, and I have no enzymes to break down food, so I take enzymes every time I eat,” he explained. “It also attacks the lungs, and it causes mucus buildup in the lungs and scarring. It’s a degenerative disease, so it gets worse and worse. I’m 21, and my lung function compared to a normal person is around 30 percent.”
Because of CF’s effect on his lungs, Diesenberg can’t participate in athletics like he used to. He has shortness of breath, and he compares this, coupled with the mucus buildup he experiences, as similar to having a constant lung infection.
CF also causes nasal polyps, or abnormal tissue growths, to develop in the sinuses, which further complicate breathing and cause headaches. Diesenberg has had over 20 surgeries in his lifetime to remove these recurring polyps.
Diesenberg is a full-time student who is involved in campus activities and is also a resident assistant in Chautauqua Hall. Still, Diesenberg said that he spends his breaks from school in the hospital receiving antibiotics. It’s a struggle for CF patients to balance a normal life with their health demands.
Diesenberg recently spoke at Delta Phi Epsilon’s seventh annual Deepher Dude Pageant, which raised over $1,000 for the Cystic Fibrosis Foundation.
“I work hard for [CF] not to be my main identifier,” he said. “I’m Bryan — not ‘that sick kid.’ It’s not something that you can readily see, but it’s a tolling disease, and it needs more awareness.”
Leighann Shaffer, a junior childhood education major and the vice president of Delta Phi Epsilon, explained that efforts to work against cystic fibrosis is one of the sorority’s philanthropies.
“We feel really passionate about finding a cure,” she said. “They’re really close to finding a cure for this, which is unbelievable.”
CF is caused by many different gene mutations, but the most common is called Delta F508, which is what Diesenberg has. It is the mutation that affects about 90 percent of CF patients. Patients who have two copies of Delta F508 (about 50 percent of patients) need two drugs to be cured: one to correct cell shape, and one to allow the passage of chloride through the cell wall.
These two drugs have been developed by a company called Vertex: VX-770, which is now FDA-approved and has been renamed Kalydeco, and VX-809, which is in its third phase of clinical testing. The drug was submitted for FDA approval last November, which means it is very close to a conclusion.
Patients receiving these two drugs showed increased lung function, as well as reductions in the rate of pulmonary exacerbations and associated hospitalizations.
Overall, the search for a cure for CF has improved monumentally since the Cystic Fibrosis Foundation was established in 1955. Even in Diesenberg’s lifetime, the advancement of medicine has been astonishing.
“When I was younger, the life expectancy was, like, toddlers,” Diesenberg recalled. “I’m 21, and I’m living a pretty normal life. Life expectancies are going up, and you never know what’s going to happen next.”
May is Cystic Fibrosis Awareness Month, and donations can be made to the Cystic Fibrosis Foundation at http://www.cff.org.