Rare Disease Report

ALA Offers New Resources to IPF Patients

APRIL 18, 2018
Carly Ornstein
At the most recent American Lung Association LUNGFORCE expo, RDR sat down with Carly Ornstein to discuss the new resources made available by the ALA to individuals affected by lung fibrosis.



Ornstein: I’m really excited. The American Lung Association has put a great deal of effort into providing resources for pulmonary fibrosis patients, their caregivers, and healthcare providers. What’s probably our biggest resource is the new section of our website, available at lung.org/pf. It really is a comprehensive resource of information for patients, caregivers, and people who just want to learn about pulmonary fibrosis, and healthcare providers. It goes into treatment, diagnosis, quality of life, disease management, and all kinds of things, but one really neat thing is that, if you visit, a little navigator tool pops up, and you can select from a drop-down whether you’re a patient, a caregiver, if you just want to learn more, or you’re a healthcare provider. The navigator will point you to the specific information you need to know for where you are right now. That’s really helpful, because we are proud of our comprehensive resource, but it can be a lot of information for someone who might be feeling overwhelmed, so there are a couple of different ways to get to the information.

We also have some really great new tools on that website, and some videos that feature an IPF patient talking about his experience. We have some amazing oxygen micro-learning units, as a way to break down certain aspects of oxygen that can be really complicated and better understood. We touch on lung transplant, as well, so we’re really excited about all of the new features of this website.

In addition to the website, we have our Better Breathers Clubs, and those are in-person support groups. We’re really working to make that they’re welcoming and accommodating for pulmonary fibrosis patients and their caregivers. It is a great way to connect with other people facing lung disease, and to learn from trained facilitators about how to manage your lung disease. Everything from working oxygen, how to exercise, and nutrition are just some of the topics that can be covered.

We also have our lung helpline, so if you want to talk to someone, like a lung health specialist, you can call at 1-800-LUNG-USA. It’s free, and you can talk to someone if you have questions about your lung disease, have general health questions, or if you’re looking for help in quitting smoking. The free services at the lung helpline are great.

Then, if you want to seek support in an online format – which we know are great for times when you’re not feeling well enough to leave the house – we have free online communities at inspire.com, and we have 2 for pulmonary fibrosis: Living with Pulmonary Fibrosis and Caring for Pulmonary Fibrosis. We also have 5 other various communities for (lung diseases). It’s a wonderful place to start.

Whatever you’re looking for, or wherever you feel like you need support, we have many different modalities. We try and meet people where they are to offer a comprehensive approach to IPF support.

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