Alphas, Friends & Family
Gary and his EFFORTS
When Gary Bain was first diagnosed with emphysema in 1986, his doctor told him he had about six years to live.
Bain couldn’t believe his ears. “Why does a doctor first tell you how long you have to live? I didn’t like that idea.”
Bain does not have Alpha-1, but that story will sound familiar to many lung-affected Alphas who have been given the same kind of shocking prognosis. Then he did something that Alphas, too, have often had to do:
He went to a few different doctors and did his homework to find out as much as he could about his disease. He got involved with his local support group.
Then in 1998, Bain and two of his fellow emphysema-afflicted friends broke away from the traditional support system and created the online group EFFORTS: Emphysema Foundation For Our Right To Survive. (These days, COPD (for Chronic Obstructive Pulmonary Disease) is the popular umbrella term used to describe emphysema, chronic bronchitis and other lung conditions.)
“We started by word of mouth, identifying ourselves,” Bain says. It took about two years for the group to really get off the ground, he said. Today, EFFORTS has proliferated into a membership of 2,600, many of whom take a hand at running the organization (all are volunteers). And it’s still growing.
EFFORTS is based on the internet. Members can receive emails and news on COPD, and can share their experiences online with how the disease affects them. All of the facts on the EFFORTS website are written by its members; Bain says respiratory therapists often get information from the site for their patients.
Another thing that the organization helps its members with is providing information on the latest drugs available for COPD treatment. For example, EFFORTS developed contacts with German pharmaceutical companies and helped some members obtain the drug Spiriva before it was released in the United States.
Bain says the motive behind EFFORTS was an influx of unanswered questions. Now, thanks to the organization, he says, there are more answers. “I think it’s great for any patient because the more you know, the better you’re armed. Once you learn to relate to the problem, you can learn out to control it.”
Bain is 67 now, 21 years after his doctor told him he only had six to live.
So what are his tips for battling COPD? “The secret is a good attitude, learning as much as you can and pulmonary rehab, if at all possible. Start walking and exercising and keep your muscles strong, so they don’t require as much oxygen.”
EFFORTS is not an Alpha-1 site, but it contains lots of valuable information for lung-affected Alphas. Visit it at www.emphysema.net.
