Newswise – Living with a disease like pulmonary fibrosis (PF) can often be isolating, and without adequate supportive care resources, patients living with all forms of PF may not have the resources to maximize quality of life. There are several supportive care and therapeutic treatments that can transform patients’ lives and, more importantly, provide them with the hope, determination and inspiration to live each day to the fullest.
The Pulmonary Fibrosis Foundation (PFF) is comprehensive International Quality of Life Month this January as an opportunity to shine the spotlight on new treatments and available supportive resources that improve the overall well-being of patients affected by PF – a debilitating, often incurable lung disease that affects more than 250,000 Americans.
Connecting with others who have had similar experiences can really improve emotional well-being and have a positive impact on the health of people living with PF. Support groups provide participants with an opportunity to share experiences, practical information and resources.
“Support groups can be an extremely valuable source of peer encouragement and inspiration for patients, caregivers, family members and friends,” says Dr. Joyce S. Lee, Senior Medical Advisor for Research and Health Care Quality at the PFF. “PFF support groups are currently meeting virtually due to the ongoing COVID-19 pandemic, making it easier than ever to get involved from the comfort and safety of your home.”
As the nation’s leading advocacy group for patients, caregivers and families affected by PF, the PFF offers 68 PFF Care Center Network websites and more than 150 support groups across the US to create a virtual support group or PFF Care Center Network website find one near you, click here.
People living with a progressive lung disease like PF often have less oxygen in their blood than normal. If levels drop to 88% or less, a healthcare provider may prescribe supplemental oxygen therapy, which can help patients thrive and improve their overall mobility.
The use of supplemental oxygen can have benefits that can improve the quality of life of patients with PF, including:
- Prevention of general breathlessness
- Increasing the ability to maintain an active lifestyle
- Helps reduce long-term strain on organs
The PFF provides a helpful step-by-step guide to getting started and using oxygen safely at home and while traveling, as well as detailed information about accessible Medicare coverage of supplemental oxygen.
Using a comprehensive approach to symptom management, pulmonary rehabilitation combines physical, mental, and nutritional therapy to enable patients to lead healthier, more active, and independent lifestyles. A structured pulmonary rehabilitation program can help patients regain their ability to function without extreme shortness of breath, and can also provide a patient with increased energy and improved focus, mood, and general well-being. It also improves both physical capacity and health-related quality of life for many people living with PF.
The PFF offers a comprehensive pulmonary rehabilitation toolkit that provides training in an easy-to-understand video module format for patients interested in exploring pulmonary rehabilitation as a treatment to minimize PF symptoms.
Clinical trials of PF treatment are research studies that show which medical approaches work best for specific individuals and provide accurate data for healthcare decision making and positive patient outcomes.
“Now more than ever, there are opportunities for patients to participate in new treatments through clinical trials,” adds Dr. Lee added. “Through active patient involvement and collaborations with various funding agencies and researchers, the PF community will continue our efforts to improve the lives of tens of thousands of patients living with this devastating disease.”
The PFF plays a key role in connecting patients to available studies and providing patients with the information they need to make informed decisions about their health. For example, the PFF Clinical Trials Education Center offers a Clinical Trials Finder tool and Drug Development Pipeline where patients can learn about the latest developments in drug development for PF-related diseases. The foundation also publishes a monthly clinical trials newsletter so patients can stay informed about trial enrollment.
Palliative care is a treatment option that focuses on anticipating, preventing, and treating the symptoms of an illness to prevent suffering. Palliative care treatments aim to improve the quality of life at every stage of the disease, so that patients can live as well as possible, even when the disease is limiting them. The PFF advises patients to explore the palliative care resources available in their communities as early as possible in their disease state to maximize quality of life. Palliative care encompasses all aspects of improving the well-being of patients with serious illnesses and can improve the management of patients with PF by addressing symptoms, supporting caregivers and helping with end-of-life planning.
“Start January on a positive note by taking advantage of the many community resources, support and information about new treatments offered by the PFF. We want to help you find a sense of hope, strength and happiness in your daily life,” concludes Dr. Lee. “With these resources and an upbeat attitude, we can all enjoy each day to the fullest!”
To learn more about pulmonary rehabilitation for PF and other treatment options that can improve quality of life, click here. For more information on PF symptoms and risk factors, visit www.AboutPF.org.
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About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until that goal is met, PFF is committed to driving improved care for patients with PF and providing unparalleled support and educational resources for patients, caregivers, family members and healthcare providers. The PFF has a four-star rating from Charity Navigator and is a charity accredited by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all requirements of the National Health Council Standards of Excellence Certification Program® and has received the Guidestar Platinum Seal of Transparency. Visit pulmonaryfibrosis.org or call for more information 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the US