On March 10, Debbie Herndon, Boise resident and ambassador for the Pulmonary Fibrosis Foundation, traveled (virtually) to Washington, D.C., with a group of fellow advocates from around the country to drive awareness and research funding for the disease.
She met with a number of congressional leaders, including from her own state. “I met with admins from Sen. Risch’s office — he even stopped in to say hello, from Sen. Crapo’s office, and Rep. Fulcher’s office,” Herndon said.
Pulmonary Fibrosis is a debilitating, incurable lung disease that causes scarring in the lungs and affects more than 200,000 Americans. It is a disease that currently has no cure — life expectancy from diagnosis is only three to five years. And even though as many people die from pulmonary fibrosis as those who die from breast cancer, it is not on most folks’ radar.
Herndon, whose husband, Steve, died from the disease at age 60 in 2015, wants to change that.
“In 2009, my husband was diagnosed with pulmonary fibrosis, a disease we knew very little about,” Herndon said. They became involved with the Idaho Pulmonary Fibrosis Support Group that was started by Laura Gilmore of Nampa; Gilmore died in February. The group’s purpose is to “bring together patients with pulmonary fibrosis to learn from each other and to provide education about the disease and support for one another,” Herndon said. “I became the leader after my husband passed away.”
Herndon said the local support group, which gets its main funding from a grant from the national foundation, allows members to learn from one another, hold discussions, vent frustrations and talk to one another about the intricacies of the disease — and even how ostracizing it can be. For instance, one symptom of the disease is shortness of breath and that means many need supplementary oxygen that the general public often associates with long-term smokers.
“Ninety percent of cases are from unknown causes and are called ‘idiopathic,’” she said. But when they are out in public with the oxygen, “they can feel like they’ve got a scarlet letter,” Herndon said. “It’s so good for them to meet with others.”
It can be hard, too, because for now, there is no cure.
“I say: Don’t give up and die — but live with pulmonary fibrosis,” said Herndon. “Live the best you can. … There is no cure, but in some people it can slow its progress,” she said. “I’ve known people who have lived 10, 17, 21 years with pulmonary fibrosis.”
Herndon, who was her husband’s caregiver from 2009 until he passed, said she knows that living with pulmonary fibrosis can be such a challenge and said the support group is invaluable. But “we’re only reaching a small percentage of those who have the disease.”
In Herndon’s virtual visit with officials, the purpose was to gain attention for future funding that may lead the way to finding a cure.
“When talking to our representatives in D.C. our ask was that they: include requested language in the congressional funding report for the National Heart, Lung, and Blood Institute on the importance of pulmonary fibrosis research and maintain pulmonary fibrosis as a topic area in the Peer Reviewed Medical Research Program at the Department of Defense,” Herndon said. They are ultimately hoping to find a way to “not only stop the progress but can heal the disease,” she said.
Being involved is a way for Herndon to honor her husband and help others, she said.
“Doing what I do and being an ambassador for the Pulmonary Fibrosis Foundation has been very healing and cathartic,” she said. “It’s about me — but it’s about them, too.”