Dolores Eckert knew better than others that the lung disease pulmonary fibrosis has no cure. Diagnosed in 2001, the Lee resident founded a Berkshire support group, participated in medical trials to advance research, and educated newly diagnosed patients, her husband Mal Eckert said.
Pulmonary fibrosis causes lungs to become scarred and stiffen, which makes it increasingly difficult to breathe, depriving the brain and other organs of oxygen, according to the federal National Heart, Lung, and Blood Institute.
In February, Dolores Eckert died at Massachusetts General Hospital awaiting a lung transplant, but the local support group she founded in 2005 will continue to help others afflicted by the disease, most common to older adults.
In the absence of a cure, support group leader John Domin guez said education can be
"I was basically terrified after I got the diagnosis" two years ago, he said. He now describes himself as "pretty good."
The 68-year-old Dalton resident said he's been relieved by knowing more about the disease.
The local IPF support group has not met since Eckert died, but will resume monthly meetings in Pittsfield, Dominguez said. The meetings, held on the fourth Thursday of every month, are open to patients, caregivers, and anyone afflicted by the disease. There are currently about a half-dozen participants. The next meeting is on May 23 in Dining Room B at Berkshire Medical Center.
Dominguez describes the approach as, "This is what happened and how do we minimize it."
The average life expectancy is three to five years, according to the National Heart, Lung, and Blood Institute The only treatment is a lung transplant.
Dolly Kervitsky, vice president of patient relations and medical affairs of the Chicago-based Pulmonary Fibrosis Foundation, said there are many questions still being researched.
What causes the disease? In cases where a cause isn't diagnosed, the patient is diagnosed with idiopathic pulmonary
fibrosis, which was the case for Eckert and Dominguez.
Is it related to genetics? Both Eckert and Dominguez had relatives with the pulmonary fibrosis, but there is no conclusive link. Dominguez said he was told by a doctor it could be related to his personal health or work environment.
Kervitsky said the FDA is doing medical trials for drugs, but availability could still be a year away.
"Thirty years ago we had nothing. Nothing. We had no drug trials," said Kervitsky, who explained progress is being made.
The Pulmonary Fibrosis Foundation estimates 50,000 new cases are diagnosed each year, with those between 50 to 70 years typically affected, women more than men.
Dominguez was diagnosed in 2010. The symptoms include a "dry, unproductive" cough he deals with throughout the day. A golfer, he paces himself because he knows rushing will leave him out of breathe.
"The terrain is going to do me in if I don't pace myself," said Dominguez, who added he can grow exhausted after climbing a single-flight of stairs.
Within the support group, he's heard from representatives of hospice and elder care. He said he can candidly talk about the emotional and physical toll, which can include coughing that makes his chest feel like it will "explode" or a reluctance to get out of bed.
"We don't know what's at the end of the road, but before we get there we are going to make stops along the way," Dominguez said.
Patients are advised to exercise, live a healthy lifestyle and not smoke, Kervitsky said.
There are no drugs that assure long-term health.
"It is bleak, but we want to give the people we support hope," Kervitsky said. "We try to stay optimistic with ... genetic
Mal Eckert described his wife as healthy, except for the cough. But the lung disease gradually progressed and affected how she lived her life. She became dependent on oxygen canisters.
Once an avid traveler, she was unable to her last years, but attended support meetings, drafted a newsletter and advocated awareness because she wanted people to know about IPF.
"That was her life," Eckert said. "She really wanted to let people know what this disease is about and all she could do about it and really help people out."
What: Pulmonary fibrosis support group.
When: Fourth Thursday of the month
Where: Next meeting is May 23 in Dining Room B at Berkshire Medical Center.
Information: John Dominguez at (413) 684-5015 or email firstname.lastname@example.org.
To reach John Sakata:
or (413) 496-6240.
On Twitter: @jsakata