Receiving a chronic disease diagnosis can be paralyzing, with a wide range of associated emotions. A patient’s family, physicians, and other health care professionals can provide a source of support, but, often, the strongest support comes from those who can empathize.
Someone who has lived with a diagnosis can provide guidance and empathy at a more personal level because, to them, it is just that – personal. Fred Schick and Betsy Glaeser have done just that by taking their personal experiences and using them to help others navigate their diagnoses.
Improving patients’ lives is the core focus of the American College of Chest Physicians and the CHEST Foundation. Events like the Belmont Stakes Dinner and Auction provide an opportunity for us to recognize and celebrate powerful stories such as Fred and Betsy’s, while also raising funds to support important initiatives that will improve patient care. Please consider joining the fight against lung disease by making a donation to the CHEST Foundation today at chestfoundation.org/donate.
Patient Advocate – Fred Schick
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 worsening symptoms.
Fred started experiencing shortness of breath and labored breathing—once to the extent that he needed to be pulled out of the water on vacation despite being an active swimmer. Because Fred was a former cardiac patient, his doctors looked to his heart for a diagnosis.
It wasn’t until his primary care physician retired that he started seeing a new doctor who took a different look at his symptoms. In hearing about the strong changes in his exercise endurance, this particular doctor made the decision to refer Fred to a pulmonologist, which ultimately led Fred on the right path to his IPF diagnosis.
Helping others navigate the path
In his 5 years since being diagnosed with IPF, Fred uses 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 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- to 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.”
Like Fred, many living with IPF wait years for a diagnosis because of the commonality in the way the symptoms present, including shortness of breath, fatigue, difficulty breathing, and others. To address this delay, the American College of Chest Physicians, supported by the CHEST Foundation, partnered with the Three Lakes Foundation to create an initiative led by a steering committee of pulmonologists and primary care physicians to join together to shorten the time to diagnosis for interstitial lung diseases like 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.