Victim’s longevity with the deadly disease inspires thousands of dying patients

Sep 5 2009

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."