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 tools to maximize quality of life. There are several supportive care and therapy treatments that can be transformative in the lives of patients and, more importantly, can offer them the hope, determination, and inspiration to live each day to the fullest.
The Pulmonary Fibrosis Foundation (PFF) is embracing International Quality of Life Month this January as an opportunity to shine the spotlight on emerging treatments and supportive resources available that improve overall wellbeing for patients affected by PF – a debilitating, often incurable lung disease affecting more than 250,000 Americans.
Support Groups
Connecting with others facing similar experiences can truly improve emotional wellbeing and have a positive impact on the health of people who are living with PF. Support groups provide an opportunity for participants 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 for the PFF. “The PFF’s 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 own home.”
As the nation’s leading advocacy organization for patients, caregivers, and loved ones who are affected by PF, the PFF offers 68 PFF Care Center Network sites and more than 150 support groups across the U.S. To find a virtual support group or PFF Care Center Network site in your area, click here.
Supplemental Oxygen
People living with a progressive lung disease like PF often have lower than normal levels of oxygen in their blood. When levels drop to 88% or lower, a health care providers may prescribe supplemental oxygen therapy, which can help patients thrive and improve their overall mobility.
Use of supplemental oxygen may have benefits that can improve quality of life for patients living with PF, including:
- Preventing overall breathlessness
- Increasing the ability to maintain an active lifestyle
- Helping to decrease long-term stress on organs
The PFF offers a helpful step-by-step guide for starting and safely using oxygen at home and when traveling, plus detailed information on accessible Medicare coverage of supplemental oxygen.
Pulmonary Rehabilitation
Using a comprehensive approach to symptom management, pulmonary rehabilitation blends physical, mental, and nutritional therapy to enable patients to live a healthier, more active, and independent lifestyle. A structured pulmonary rehabilitation program can help patients restore the ability to function without extreme breathlessness and can also provide a patient with more energy and improved focus, mood, and overall sense of wellbeing. It also improves both exercise capacity and health-related quality of life for many people living with PF.
The PFF offers a comprehensive Pulmonary Rehabilitation Toolkit which provides education in an easy-to-digest video module format for patients interested in exploring pulmonary rehabilitation as a treatment for minimizing PF symptoms.
Clinical Trials
Clinical trials for PF treatment are research studies that show which medical approaches work best for certain individuals and produce accurate data for health care decision making and positive patient outcomes.
“Now more than ever, there are opportunities for patients to participate in emerging treatments through clinical trials,” adds Dr. Lee. “With active patient participation and collaboration with various funding agencies and investigators, the PF community will continue its efforts in improving the lives of the tens of thousands of patients living with this devastating disease.”
The PFF plays a key role in connecting patients to available trials and provides patients with the information required to make educated decisions for their health. For example, the PFF Clinical Trials Education Center features a Clinical Trial Finder tool and Drug Development Pipeline, where patients can learn about the latest in drug development for PF-related conditions. The Foundation also releases a monthly a Clinical Trials newsletter so patients can stay up to date on enrolling trials.
Palliative Care
Palliative care is a treatment option that focuses on anticipating, preventing, and treating the symptoms of a disease in order to prevent suffering. Palliative care treatments aim to improve quality of life at every stage of illness so patients may live as fully as possible, even as disease limits them. The PFF advises that patients explore 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 wellbeing of patients living with serious illness and can augment the management of patients with PF by addressing symptoms, supporting caregivers, and aiding in end-of-life planning.
“This January, start the New Year on a positive note by taking advantage of the many community resources, support, and information about emerging treatments available from the PFF. We want to help you cultivate a sense of hope, strength, and happiness in your daily life,” Dr. Lee concludes. “With these resources and an optimistic outlook, we can all live each day to the fullest!”
To learn more about pulmonary rehabilitation for PF and other treatment options which can improve quality of life, click here. For more information about 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 this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program® and has earned the Guidestar Platinum Seal of Transparency. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S.
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