Posted on November 28, 2017 |
When Karen Anzalone lost her father to COPD in November 2010, she knew she had to do something to help others. Today the memory of her father, John Ferrara Jr., inspires her work as the New York State Captain, a C.O.P.D. Information Line Associate and grassroots advocate. She remains a passionate member of the COPD community because she doesn’t want patients and caregivers to feel the way she did in her search for education about the disease.
For eight years, Karen’s father, John, a retired Navy flight engineer, had a chronic cough and breathing problems. When he had to catch his breath for 20 minutes after walking a short distance, he agreed to see a doctor. His own father lived with COPD so John was familiar with the disease and knew just how debilitating it was. When he was finally diagnosed, John wasn’t given much information on how to manage his COPD. That’s when Karen stepped in as her father’s primary caregiver and advocate.
Education is Key
Karen believes that education is the key to living a full life with COPD. “Often, patients are provided with their diagnosis and have limited information to best manage their disease. If my father and I had had more education it would have changed our situation dramatically because I would have been able to ask the doctor the right questions, especially regarding pulmonary rehab.”
Karen believes the stigma associated with COPD prevented her father from seeking additional information or trying to improve his well-being. He would hide his symptoms from friends and family and quietly accept his lifestyle as something he could not improve. “There was no one telling us ‘you can live with your COPD’—instead we were just waiting for the end.”
Karen wants everyone to know that a full life is possible with COPD—but first patients have to be honest with themselves, their loved ones and their doctors. “I think people are afraid to ask questions because they are afraid of the answers. When my father was diagnosed, the doctor gave him one piece of paper and some medication and that was it. We went on with no information.”
“Once you educate yourself as a caregiver and patient, it eliminates the fear. Having information gives you something to work with and gives you more to discuss. The more you can talk about the disease, the better you are able to cope physically and emotionally.”
Karen says family and friends of individuals living with COPD should be sensitive to the situation. She remembers telling her father, “You can talk to me when you’re ready.”
She advises caregivers to be patient with their loved ones as they have to be ready to face some of the common fears of living with COPD. “My dad would always say he’s fine, but he would stand in the tripod position. He was hiding it by saying he just had back pain.” Karen says education helped her family open up the lines of communication.
Be an Advocate
Karen became a COPD advocate to help the 30 million Americans with COPD. “My father died from COPD in November 2010. He was my best friend, my everything, my entire world. As his primary caregiver and witness to the devastating effects of this disease, I knew I needed to make a difference for everyone affected by COPD. My journey has taken me from being my dad’s caregiver to serving the COPD community. My focus has expanded to community-based advocacy and social media: ‘advocacy is key to raising awareness’.”
Karen is very active within the COPD community through COPD360social.org. A few years ago, Karen created a virtual World COPD Day, which had thousands of participants and was shared worldwide.
Her proudest moment, however, was when “I met with US State Representative for New York Steve Israel and convinced him to join the Congressional COPD Caucus. As New York State Captain, I want to raise COPD awareness. It’s vital that we educate and empower patients to learn and manage their COPD. I’d like to get more caregivers involved with advocacy efforts, especially in New York.”
Karen also works as an Associate for the C.O.P.D. Information Line (1-866-316-2673), a call center staffed by patients and caregivers. “When a caller tells me a doctor is not supportive, my first suggestion is—can you change a doctor? Think of your doctor as a partner, that’s the only way to understand and treat your condition.”
Karen keeps the spirit of her father alive through her advocacy work. His photo on her desk is a constant reminder of the power of helping others and importance of building the COPD community. “There are millions like me: parents, children, brothers and sisters—I know they feel the way I did. We have to help these people. You can live with COPD, you just need to get the resources, education and tools to advocate for yourself.”
In recognition of COPD Awareness Month, the COPD Foundation is featuring a new “Faces of COPD” profile throughout November. The “A New Day, A New Face of COPD” blog series highlights the stories of those who have been touched by COPD in any capacity. Tell your story by e-mailing us at [email protected] or commenting below.
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