Pulmonary Fibrosis

The Coalition for Pulmonary Fibrosis (CPF) is helping people all over the United States, and even some from other countries, as they cope with a common disease that still remains somewhat of a mystery.
Pulmonary fibrosis, also known as idiopathic pulmonary fibrosis, is a lung disorder that affects an estimated 128,000 Americans with about 48,000 new cases diagnosed each year. The two main features of this disease are scarring and lung deterioration. It can lead to breathing problems.
The cause of pulmonary fibrosis remains unknown. There also is no cure for it at this point in time. More than half of the people with this disease die from it within five years after being diagnosed. The amount of people who die from it annually is about 40,000.
CPF was formed in 2001 in order to provide support to families and patients. Its other functions include providing education, being an advocate and doing fundraising to support research.
Bayside resident Bob Lovett was diagnosed with pulmonary fibrosis about eight years ago. He said that he values the coalition’s accessibility and the information they provide.
“It is also comforting to me to know that if I come to need it, they have literature and resources available for patients and their families about coping with the psychological and social aspects of the disease, the use of oxygen, etc.,” Lovett said. He continued, “In short, having them means we’re not alone.”
Many of the individuals associated with CPF have had loved ones affected by the disease. Teresa Richardson Barnes, the Vice President of Patient Outreach & Advocacy and one of the founders, has lost five family members to pulmonary fibrosis, including her father.
Barnes said that there are several support groups in New York State that the coalition works with. Four of them are in Albany, Troy, Schenectady, and Sleepy Hollow. A fifth one is being created. The coalition also has a partnership with Pulmonary Fibrosis Friends, which is an online support group that can be found at https://health.groups.yahoo.com/group/PFF/.
Barnes said that “there seems to be an increase in patients” in New York that have pulmonary fibrosis, and added that the question is if it is a cause and effect of 9/11.
National Idiopathic Pulmonary Fibrosis Awareness Week will be held from September 7 to September 13. During the week, on September 9 and 10, members of the coalition will be in Washington to speak to members of Congress about supporting the Pulmonary Fibrosis Research Enhancement Act.
The legislation, which was introduced by Congressmembers Brian Baird and Mike Castle, would provide $15 million for research involving pulmonary fibrosis. It would also expand research on the disease at the National Institutes of Health, create a national registry for patients with the disease and a national action plan to address it. The bill is also calling for a national summit to discuss pulmonary fibrosis.
Barnes said that one of the ways people can assist the coalition is by writing letters to their Congressmembers encouraging them to support the bill. She said that other ways individuals can help are by having some sort of fundraiser, regardless of size, or even by spreading the word.
“We need so much and there’s so much that needs to be done almost any one can help,” Barnes said. She continued, “Every little bit helps in this cause. It’s all kinds of efforts that are going to make the difference.”
For more information on the Coalition for Pulmonary Fibrosis, call 888-222-8541 or visit www.coalitionforpf.org.