Living With Lung Disease
The upcoming CHEST Foundation Belmont Stakes Dinner and Auction on June 11 will celebrate those individuals living with lung disease who advocate for others with a shared diagnosis. Featured speakers, Fred Schick and Betsy Glaeser, symbolize the power of the patient in advancing lung health awareness.
Patients invited to share their experience at the Belmont Stakes fundraiser event
Increasing awareness of pulmonary fibrosis
Fred Schick of the Chicagoland area was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017 after years of searching for the root cause of his symptoms. An already diagnosed cardiac patient, Fred started experiencing shortness of breath and labored breathing to the point where he needed to be pulled out of the water while swimming despite being an active swimmer. Fred’s doctors looked to his heart for a diagnosis.
It wasn’t until his long-time primary care physician retired and he started seeing a new doctor that Fred started to get answers to his recent onset of shortness of breath. After hearing Fred describe the sudden and strong changes in his exercise endurance, his new physician made the decision to refer Fred to a pulmonologist, which led to his IPF diagnosis.
Like Fred, many people living with pulmonary fibrosis wait for years to find a diagnosis because it’s fairly rare and an array of more common diagnoses are often ruled out first. To address this delay, the CHEST Foundation, in partnership with Three Lakes Foundation, is gathering a steering committee comprised of pulmonologists and primary care physicians to develop a strategy to shorten the time to diagnosis for IPF. Among other activities, the steering committee will work to create tools for physicians to use during patient intake that can more quickly bring IPF into the conversation when it is pertinent.
In the 5 years since being diagnosed with IPF, Fred has used his experience to advocate for others living with this illness. Active in support groups for those with IPF, he is especially focused on helping others navigate the first few months after receiving their diagnosis. Fred knows from experience that receiving the IPF diagnosis is something to come to terms with, but he encourages others to look to him for an example of how to live with the illness.
“The first thing I say to someone who has been recently diagnosed with pulmonary fibrosis is, ‘Whatever you’ve read on the internet, don’t believe it,’ because there are a lot of people who live well beyond the 3-5 year expectancy you’ll see in your Google search. I also encourage everyone to be their own health advocate—tell your doctor if anything in your life is abnormal because you know your body better than anyone.”
Blazing the trail for NTM
The second speaker at the Belmont Stakes event, Betsy Glaeser, is a New York resident who was diagnosed with pulmonary nontuberculous mycobacteria (NTM) 18 years ago.
Like Fred, the time to a diagnosis was long for Betsy. Frequently short of breath with persistent labored breathing, she was hospitalized multiple times for pneumonia and treated again and again with standard antibiotics. In 1998, there were no programs dedicated to NTM, and when her sputum was tested, it was only for pneumonia.
As someone who regularly traveled 4 days a week for work, when her symptoms worsened, her undiagnosed illness caused her to quit her job.
Betsy grew especially concerned about her illness when she developed hemoptysis and began coughing up blood. She sought care at the Mayo Clinic where she was finally diagnosed with a rare form of NTM.
With this resistant strain of NTM requiring daily, constant treatment, Betsy was fortunate to be accepted into the National Institutes of Health NTM protocol, which has directed her care, supplemented by NYU Langone.
Despite the challenges of having NTM lung disease, Betsy maintains an active and enriching life. Betsy serves as a charter member and co-leader of a New York NTM patient support group and serves as a member of the NTM Info & Research (NTMir) Board of Directors.
Her goal is to ensure that no one living with NTM feels alone or frightened. “Not so long ago—and now, too, even—there were doctors who did not know how to treat NTM,” says Betsy. “But, boy, has it gotten better—as I’ve progressed through all of my medications and lived with this disease, NTM has progressed right along with me. I paved the way of NTM knowledge with my lived experiences, but I’ve been so fortunate to receive medical care from those who knew the most about NTM.”
To raise awareness for NTM and bronchiectasis, the COPD Foundation created World Bronchiectasis Day, which will be celebrated for the first time on July 1, 2022. With a global planning committee of patient advocates, leading experts, and others, its aim is to raise global awareness, share knowledge, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide.