Long-term ALS survivor demands to be heard
May 4th, 2008
From the New York Times:
When Chris Pendergast was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease) in 1993, he wasn’t expected to live long. Now, almost fifteen years later, he’s using his long-term survivorship to draw attention to the need for more ALS research and immediate access to Medicare and Social Security benefits. His foundation, Ride for Life, has raised $3 million for research and patient services.
… Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in – one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.
He’d like to see the disability community coordinate its efforts. “I don’t think different disease communities should be scrapping for pieces of the pie, ” he says. “I would like to have a bigger pie.”
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June 8th, 2009 at 6:19 am
Up to 10% of ALS patients live 10 or more years with the disease and 5% for 20 or more years. I would not say that equates to “almost no one.” There are different variants of the disease and progression rates vary widely. Individuals can also choose to extend their lives by potentially several years or more by opting to go on tracheostomy ventilation. But good luck hearing anything but negativity from the media regarding this disease.