As PF patients, we need all the help we can get, no matter where we are in the progression of this disease.
Newly diagnosed patients often feel shocked, confused, angry, sad, or anxious, and desperately need information to figure out what is happening to them. It is normal to feel alone and overwhelmed after receiving such terrible news about a disease most people have never heard of. Support from others who understand is so important.
After the initial shock, patients have questions about the progression of the disease and need information about supplemental oxygen, medication, medical tests, and how to live with this disease. They also need resources with information about ways to slow the disease through medication, exercise, and healthy nutrition. Support through online or in-person groups provides many answers to these important questions.
As the disease progresses, patients also want tools to cope with their emotions, help their loved ones, and provide information on end-of-life issues and planning. And they need lots of support from loved ones and those who understand.
I try to provide a lot of this information in my column because I know how rocky and lonely this road is. It is wonderful to connect with so many of you who share my feelings and experiences.
Pulmonary Fibrosis Foundation
A major resource for our many needs is the Pulmonary Fibrosis Foundation (PFF). Founded in 2000, this nonprofit organization is dedicated to identifying effective PF treatments and assisting those living with the disease. The PFF website is full of resources for patients and their loved ones.
I was emailed a statement from the PFF that said, “The PFF mobilizes people and resources to provide access to high-quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide.”
I’m so grateful to the PFF for all it does for us. I learned even more from a recent interview that my friend and fellow patient Bill Vick had with Bill Schmidt, president and CEO of the PFF. Bill Vick is the founder of PF Warrior, a valuable website with lots of videos and practical help.
You can watch this wonderful video here:
Here’s what I gleaned from attending the webinar:
How can PFF help me?
Every week, 1,000 people are diagnosed with PF or IPF. The PFF can help you get much-needed information in a variety of ways:
- Use its contact page to find ways of speaking with their patient communication center or request a PF Information Guide.
- Go to its website and learn about support groups that exist across the country. Currently, over 100 groups exist, and they are very helpful.
- Sign up for webinars that take place periodically on topics specific to concerns we have as patients. You can also watch over 30 previously aired webinar videos anytime on important topics such as oxygen use, palliative care, help for caregivers, medications, and a whole lot more.
- Download its new app, PF Health App, to your phone to track symptoms for better disease management. Access the latest PFF news and information, and donate anonymous data to advance PF research. Currently, it is only available for iOS (Apple), but an Android version will be available soon.
How is the PFF helping to find a cure?
- For the United States, the PFF advocates for us with the U.S. Congress and the National Institutes of Health (NIH), which is the largest funder of research in the world. It lobbies for funding research for a cure, as well as for better access to oxygen for patients, especially with Medicare.
- It maintains the PF Registry, a database of patients who volunteer their demographic, medical records, and history of treatment to help scientists learn more about the history of the disease, see treatment patterns across the U.S., and conduct research to find a cure. PF patients who are being seen at any of our participating Care Center Network sites may be eligible to participate in the registry. View a map of CCN sites.
How can we get involved with PFF?
- Help lobby bills or causes in Washington.
- Get involved in support groups.
- Be part of fundraising efforts (walk teams).
Watching this video helped me not feel as alone in this struggle. It’s so nice to be part of a family of patients, caregivers, and medical professionals who are all fighting to find a cure, shorten the timeline to diagnosis and treatment, and help us live with our disease. I’m grateful for the Pulmonary Fibrosis Foundation, and I hope you will take advantage of its resources. Special thanks to Bill Vick, Bill Schmidt, and the PFF for giving permission to use their video in my column today.
How about you?
Have you taken advantage of the resources at the PFF? Which ones interest you the most? Please leave a comment below, and share with those who could benefit via email or on social media. We’re in this together!
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.