His Longevity with the Deadly Disease Inspires Thousands of Dying Patients
SAN JOSE, Calif., Sept. 4 /PRNewswire-USNewswire/ -- When Jerry Lewis takes the stage again on Labor Day 2009 for the Muscular Dystrophy Association Telethon, thousands of people who suffer from the same lung disease as he will be watching - and not just to hear the funny things he'll say. They'll be looking for inspiration from the funny man who suffers from a not-so-funny and little known fatal lung disease.
Lewis disclosed several years ago that he is dying from Pulmonary Fibrosis (PF), a disease that suffocates its victims by scarring the lungs. The disease is irreversible, untreatable, and invariably fatal. Most patients die within three years of diagnosis, which is why many are looking to the celebrity for clues to his survival for so many years with the disease. They are also looking to him to speak out about PF, a disease that is barely known by much of the public and is in desperate need of increased research funding to find ways to successfully treat it.
"I have to say, I'm curious," said patient Ellen Foley. "There is no FDA-approved treatment for this disease and many of us are going downhill very quickly. He doesn't seem to be and I'm really happy for him. As for me, I'm on supplemental oxygen 24 hours a day."
Lewis has spoken many times publicly about his disease but has not yet spoken out on behalf of the cause that has stricken him so personally. The Coalition for Pulmonary Fibrosis (CPF) would ask Lewis to help give a voice to hundreds of thousands of people who are and will soon be affected by PF. "A celebrity voice could change the future for thousands of patients by bringing much-needed attention to the cause," said Mishka Michon, the Chief Executive Officer for the CPF. "So many celebrities haven't lived long enough with the disease to make their voices heard before they died, like Robert Goulet, Marlon Brando and Odetta. We would be so appreciative if Mr. Lewis would help us."
One of the biggest problems the CPF faces is getting the attention of the public, including the media, on PF. No major national media coverage to date has been known to focus on the disease that threatens the lives of all Americans and claims 40,000 lives a year - the same number as breast cancer. "Everyone is at risk for the disease," said Marvin Schwarz, M.D., top PF pulmonologist and researcher from the University of Colorado Denver and Chairman of the CPF board of directors. "We don't know what causes it, we don't know how to stop it and we don't know what to do to prevent it. Much more research is needed to find the answers we've been seeking for years and so urgently need now."
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring - known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 19,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
|SOURCE Coalition for Pulmonary Fibrosis|
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