More than 20 years after her COPD diagnosis, Grace Anne Dorney Koppel and her husband, broadcast journalist Ted Koppel, are still fighting to raise awareness and funds to treat the disease for others through the Dorney-Koppel Foundation.
- Ted Koppel and his wife, Grace Anne Dorney Koppel, founded the Dorney-Koppel Foundation to raise awareness about COPD, a chronic lung disease.
- Grace Anne Dorney Koppel has lived with COPD for 20 years. She’s made it her life’s passion to help others living with the same condition.
- While COPD is often associated with smoking, more than 25 percent of people with COPD have never smoked.
- People with COPD are at increased risk of severe complications from COVID-19.
Ted Koppel is best known for his accolades as a broadcast journalist, particularly the 25 years he anchored ABC’s “Nightline.”
However, a personal passion of his is just as notable.
Koppel and his wife of 58 years, Grace Anne Dorney Koppel, have made it their mission to spread awareness about chronic obstructive pulmonary disease (COPD).
COPD is a group of lung diseases, including emphysema and chronic bronchitis, that block airflow and make it difficult to breathe.
In 2001, after struggling to lie down, sleep, and walk, Dorney Koppel was diagnosed with COPD.
“I couldn’t walk across a room 20 feet without stopping to catch my breath. It felt immediate, but COPD is not. It’s a disease that takes decades, and it progresses slowly in your lungs. Unless you’re diagnosed early, you almost collapse,” Dorney Koppel told Healthline.
While smoking was the cause of her COPD, Dorney Koppel’s diagnosis came a decade after she quit.
“I did not realize the risks that I was taking when I began smoking, and when I stopped smoking 30 years ago, 10 years before I was diagnosed, it was too late,” she said.
While smoking is a cause of COPD, the Centers for Disease Control and Prevention (CDC) reports that about
In these cases, exposure to dust, gas, chemicals, and more in the workplace may be the cause.
Dr. MeiLan Han, a professor of medicine at the University of Michigan, said that many people mistakenly think smoking is the only cause of COPD.
“Another misconception is that these patients are old and male. We know that the effects of tobacco smoke can actually be seen on the lungs in middle age, and roughly half [of] those with COPD in the U.S. are women,” Han told Healthline.
Lack of understanding about COPD may also contribute to the estimated 12 to 15 million Americans who are living with the disease and don’t know it, according to the U.S. COPD Coalition.
“We don’t implement any kind of routine screening for lung disease, which contributes to underdiagnosis,” Han said. “Further, some patients may be initially asymptomatic, and then even when disease progresses, patients may attribute the symptoms to something else and not raise the issue with their healthcare provider.”
When Dorney Koppel received her COPD diagnosis, she only had 27 percent lung function.
Her doctor gave her 3 to 5 years to live.
“He said, ‘Well, I suggest you make end-of-life preparations,’” she recalled.
However, Dorney Koppel credits pulmonary rehabilitation, an exercise program combined with education about COPD, for outliving her prognosis.
“I took pulmonary rehab and graduated from it and, to this day 20 years later, I practice what I learned, and of course in those intervening years, I have studied this disease and have learned an awful lot about it,” said Dorney Koppel.
Grateful his wife had access to such treatment, Koppel said he wanted to pay it forward, especially given many people with COPD in the United States can’t afford to get treatment.
“Grace Anne talks about the impact of pulmonary rehab, and the impact is huge and has made an enormous difference in her life and in the lives of many people. But pulmonary rehab is only available to a tiny fraction of the people who have COPD, and that’s a national disgrace,” Koppel told Healthline.
To change this, the couple founded the Dorney-Koppel Foundation. Over the past 11 years, they have set up pulmonary rehabilitation clinics in West Virginia, Maryland, and New Orleans.
“Almost all but one of our clinics are in rural America, because that’s where the prevalence of COPD is highest, and it’s also where there are fewest facilities for people to learn how to take control of their lives,” said Dorney Koppel.
Through the foundation, they also hope to raise funds for COPD, given it’s the third leading cause of death by disease in the country, according to the American Lung Association.
“Think about that. It’s the third chronic disease in the country right after heart disease and cancer… Where does it rank in terms of congressional funding? I think it’s 165th. It’s just a disgrace,” said Koppel.
To raise awareness and in honor of National COPD Awareness Month, the foundation is hosting a free virtual concert featuring Lyle Lovett, Rodney Crowell, and Steve Earle.
COPD is diagnosed based on medical history and a breathing test called spirometry.
“When patients perform the breathing test, we see a characteristic pattern of inability to release air quickly. Small airway disease and holes in the lung tissue (emphysema) lead to air trapping,” said Han.
To self-assess whether your breathing should be looked at by a doctor, the Dorney-Koppel Foundation, along with the COPD Foundation, American Respiratory Care Foundation, and FCB Health NY, offer a COPD self-assessment at COPD SOS.
“COPD is a common and highly morbid disorder that is both underdiagnosed and underfunded… Persons with respiratory symptoms and healthcare providers need to be alerted about the importance of early diagnosis and prompt initiation of treatment,” Dr. Enid Neptune, an associate professor at Johns Hopkins University, told Healthline.
While there’s no current cure for COPD, medications and inhaled steroids in addition to pulmonary rehab can help reduce lung inflammation and improve quality of life.
However, Neptune is hopeful that more measures for diagnosis and effective treatments are on the rise.
“[The] development of research tools that allow us to identify molecular signatures of COPD that can be used for precision diagnosis and effective therapeutic targeting is a major step forward,” she said.
While the medical community continues to do their part, Dorney Koppel continues to do hers.
“I am a patient advocate. I speak for this disease because I know that with treatment — the proper treatment — that people really can restore their lives,” she said. “It’s time to kick shame out the door and treat the disease and the person.”
Her husband backs her efforts, and is happy to use his popularity as an acclaimed journalist to open doors.
However, Koppel said his wife is a force of nature that leads the way.
“[She] single-handedly, this is obviously a very biased opinion, has grown more attention to patients’ rights and what patients need to be doing, and what patients can do, than any other single person in the country. She’s done a great job,” said Koppel.
This story originally appeared on: Healthline.com - Author:Cathy Cassata