Advocates shine a light on living life with PF this awareness month
Global initiatives aim to boost diagnoses, improve early care
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September is Pulmonary Fibrosis Awareness Month, and advocates around the globe are joining together to shine a light on what it means to live with pulmonary fibrosis (PF), a condition characterized by lung scarring and marked by breathing problems.
“It is a lonely feeling to have a chronic disease others haven’t heard of and be constantly explaining both the condition and any limitations you have,” Jennifer Schroeder, manager of nationwide health promotions for the American Lung Association (ALA), told Pulmonary Fibrosis News, adding that “it’s also important to raise awareness for everyone to recognize the signs of new or worsening breathing difficulties.”
Throughout September, people in the PF community are encouraged to connect with one another and explore resources that may be useful. Supporters are also asked to help increase awareness — and advocacy.
“When people are more aware of what pulmonary fibrosis is, they can better support an individual who shares that they have the condition,” Schroeder said.
Schroeder noted that “a diagnosis of pulmonary fibrosis can feel overwhelming, but there is hope.” She said people with PF should know that “there are steps you can take to help ensure you receive the best possible care.”
“By working closely with your specialist, understanding your treatment options and taking an active role in your care, you can help ensure you are receiving the support and treatment that is right for you,” Schroeder said.
American Lung Association program connects patients with experts
The ALA offers a free program that matches people with PF and other lung diseases with a Lung Health Navigator, an expert who can provide education and guidance.
“Lung Health Navigators are respiratory therapists and registered nurses who take the time to answer your questions and provide guidance so you can better manage your condition,” Schroeder said. “This free service is available in English or Spanish, and a common comment from those who participate is, ‘I wish I knew about this sooner!'”
The nonprofit also offers the “Learning to Live with PF” program, which provides a workbook with topics ranging from diagnosis and treatment to nutrition and improving communication between patients and their healthcare team. It also includes membership in the nationwide Patient and Caregiver Network.
The program is supported by the Feldman Family Foundation, which works to “raise essential awareness and funding” in PF.
“Our partnership with the American Lung Association has given us the important opportunity to fulfill our mission in helping those impacted by pulmonary fibrosis,” Mitch Feldman, the foundation’s president, said in a press release from ALA detailing the program.
“The Learning to Live with Pulmonary Fibrosis workbook provides extremely vital and useful information along with great comfort to families, and we encourage others to enroll in the program,” Felman said.
Greater awareness of the signs and symptoms [of pulmonary fibrosis] can lead to earlier diagnosis and timely intervention, while education can help people understand their treatment options.
Making use of all available resources is key, according to Schroeder.
“Whether it is a support group, one-on-one support and education, such as the Lung Health Navigator, or simply connecting with others who understand the journey, these resources can help reduce feelings of isolation and provide practical guidance and encouragement,” Schroeder said.
In addition to building community for people with PF, another goal of awareness month for the ALA is educating public about PF.
“Greater awareness of the signs and symptoms can lead to earlier diagnosis and timely intervention, while education can help people understand their treatment options and the value of seeing a pulmonary fibrosis specialist,” Schroeder said.
Advocates campaign for earlier action, greater funding
Around the world, other advocacy groups are also working to educate the public about PF throughout this awareness month.
In Canada, the Canadian Pulmonary Fibrosis Foundation (CPFF) is running an awareness campaign that includes lighting up monuments in red and blue and hosting community walks across the country.
The CPFF is also sharing patient and caregiver stories and will host virtual support groups throughout the month. And as in years past, the foundation is also running the Pucker Up Challenge, which encourages people who don’t have PF to breathe through a straw while holding their nose, which can mimic the feeling of breathlessness that is common in PF.
Across the pond, the U.K.-based group Action for Pulmonary Fibrosis is encouraging people in the PF community to share their stories this September, whether by spreading the word online or bringing people together in person. The U.K. group is also encouraging community members to “speak up to decision-makers” and is running a fundraising challenge called Go Your Distance.
Also in Europe, the European Pulmonary Fibrosis Federation (EU-PFF) is leading a campaign that aims to promote earlier diagnosis of PF. The group noted that early PF symptoms, such as breathlessness and cough, are often ignored or dismissed — meaning patients often aren’t diagnosed until the disease has already reached advanced stages.
The EU-PFF’s campaign focuses on the tagline, “Don’t normalise breathlessness – question it,” with the goal of prompting people who may be experiencing early symptoms of PF to seek prompt medical care.
“This message is designed to encourage earlier action when symptoms appear, prompt more informed conversations with healthcare professionals, and help reduce the diagnostic delays that many people living with PF experience,” the EU-PFF states on its website, which also offers a video and patient-focused resources for the campaign.
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