WESCOVILLE, Pa. — Lehigh Valley veteran Bill Tunke is living with pulmonary fibrosis.
“This disease needs a lot of support,” Tunke said. “I would probably say, it's on the lines of what happened to women with breast cancer.”
- Veterans in the Lehigh Valley living with pulmonary fibrosis and other lung conditions now have a support group
- The Wescoe Foundation for pulmonary fibrosis was founded by Jennifer Wescoe in honor of her late father who served
- The Veterans group meets virtually every second Thursday of the month
Tunke, of Wescoville, is a Vietnam war veteran who was exposed to Agent Orange while serving overseas and now has an interstitial lung disease (ILD). Agent Orange is a tactical herbicide used by the U.S. military for control of vegetation during the war. Although the cause of pulmonary fibrosis is unknown, there’s some evidence pointing to exposure to the chemical as one potential cause.
The disease has changed Tunke’s way of life. “You got up this morning, you washed your face, took a shower, whatever you did, you got dressed. I can't, I can't do it as quickly as I did before the disease happened, because I get out of breath,” he explained.
Pulmonary fibrosis is scarring of the lungs, making it difficult for the patient to breathe.
The Vietnam vet and others like him living with lung conditions have a new resource for help in the Lehigh Valley. The Wescoe Foundation for Pulmonary Fibrosis created a support group this spring specifically for those who have served.
The organization was founded by Jennifer Wescoe in honor of her late father, Ron Wescoe.
“My dad was a Marine and so a lot of questions that came into play for my dad is, ‘What were you exposed to?’ All these types of questions, and it took about a year and a half to establish our veterans ILD group.”
Wescoe’s father passed away from Idiopathic Pulmonary Fibrosis (IPF) in 2004. She started the non-profit in his memory and now works with veterans and others living with similar diseases to offer supportive care, including education, resources and advocacy for the pulmonary fibrosis community.
“I just started off with raising awareness for pulmonary fibrosis through a walk and you know, through the years we've evolved into a very, very strong force really within the pulmonary fibrosis community,” she said.
Based in Coopersburg, the Wescoe Foundation is one of three leading organizations in the country that provides this type of supportive care for patients and families.
“It's the only support network in the U.S. that brings together and unites the pulmonary fibrosis community."Jennifer Wescoe, founder of Wescoe Foundation for Pulmonary Fibrosis
“It's the only support network in the U.S. that brings together and unites the pulmonary fibrosis community to make sure early diagnosis gets connected to an advanced lung center,” Wescoe said. She went on to say there are five care centers in Pennsylvania, including UPMC, Penn State Hershey, Jefferson Health, Temple Lung Center and Penn Medicine.
“When diagnosed, they're very much left trying to figure out what are the next steps, not only being hit by a two-by-four knowing that you have three to five years left of all of life, generally speaking. They don't know where to go, where to turn,” said Wescoe.
“What's so important for us is to raise awareness that folks notice these types of symptoms, is to be knowledgeable about IPF, to ask those questions with your PCP, ultimately being referred to specialists or pulmonologists, not only in Pennsylvania but wherever one is.”
“It's about support,” said Tunke. He said the meetings, including the veterans' group, help people living with the disease to feel less alone. “They give you kind of a snapshot into their life, in terms of what's going on, how they're doing.”
“The medication that I am on is very expensive. It's over $7,000 a month. So, for some people who don't have that kind of money, it's tough,” he explained. “So Jen, in her infinite wisdom as a supporter, helps patients to try to get into the right people so that they can get that medication at a much discounted rate or for nothing.”
The Wescosville man now finds purpose in supporting those in similar situations and said he has even made some new friends along the way. “I go to the gym two to three times a week and I play golf twice a week because I'm not going to let this disease control me,” Tunke said.
The veterans' group meets virtually every 2nd Thursday of the month. Other support groups for those living with lung conditions can be found on the Wescoe Foundation website.
