The Internet Is a Valuable Tool for PF Information, but Always Be Cautious

When it comes to online research about rare disease, the internet is a blessing and a curse

Samuel Kirton avatar

by Samuel Kirton |

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If you have spent any time on the internet, you have likely found some incredibly useful, accurate information. At the same time, you likely have encountered misleading claims, missed an opportunity to have large sums of money transferred to you, and received some bad advice.

The ability to exchange information over the internet became publicly available in the 1980s. The first webpage was published on the World Wide Web in 1991. Google, one of the more widely used search engines, came into existence in 1998.

These are only select milestones and not an endorsement or condemnation of any practices or products. The internet, specifically the publication of webpages, is poorly regulated.

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Know your sources

When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, it was the beginning of a new journey for my wife, Susan, and me. As I wrote in an earlier column, we left the Advanced Lung Disease and Transplant Center at Inova Fairfax Hospital in Virginia, made our way to the garage, and began searching the internet from our car.

Not everything you read on the internet is true, accurate, or even current. It takes some work to find a source you have confidence in to provide reliable information. Personally, I have come to believe you can find supporting data for almost any theory on the internet.

The number of sites dedicated to a specific rare disease seems to grow each month. Some of these are created by well-intentioned people who want to share their experiences and believe they have discovered a universal remedy for a condition they have experienced. Always question the information you find and discuss it with your healthcare team, if necessary.

Pulmonary fibrosis information

One of the first sources of reliable information about pulmonary fibrosis (PF) I found was the Pulmonary Fibrosis Foundation (PFF) website. The PFF had curated a collection of resources for patients, caregivers, and the medical community that I found useful.

The foundation also created the PFF Care Center Network to accredit care centers that use a multidisciplinary approach to providing care for pulmonary fibrosis patients. Today, the Care Center Network has expanded to 74 sites across 34 U.S. states.

Patient experience

I also sought out patient experiences because I wanted to better understand what I should expect in the future. I discovered Pulmonary Fibrosis News columnist Kim Fredrickson, who was diagnosed with PF in 2014 and sadly passed away in 2019. Kim wrote extensively about her experiences, authoring several books in addition to her column. Reading one of Kim’s columns was my introduction to Pulmonary Fibrosis News.

I developed a growing sense of trust with each of Kim’s columns that I read. Pulmonary Fibrosis News became another tool in my toolbox. Kim’s advocacy lives on in her books and columns, which are still available online.

Social media

Social media sites can be a powerful tool and, at the same time, a source for some bad advice. You can learn about what others have experienced on their PF journey and ask questions. Social media sites dedicated to PF also become an informal virtual support group.

They become less valuable when members of the group begin to offer medical advice, especially if it is contrary to guidance by a patient’s care team. One such exchange I recently witnessed was a post-transplant patient who longed for a food item that is generally recognized as not being allowed. Another post-transplant patient offered that they had ignored that restriction and it had not harmed them.

Restricted items are on the list because of the potential risk to an immunosuppressed, post-transplant patient. Allowing advice on a social media site to help you rationalize a decision you are about to make is not recommended.

Seeking truth

It is natural for each of us on this journey to seek the truth. Regardless of your role, patients, caregivers, and families have a thirst for knowledge about PF. Even today, 13 months after my bilateral lung transplant, I want to know more. My PF was idiopathic, meaning the cause was unknown.

Seek out sources you can trust. Ask your care team for sources they might recommend. Find a guide on your journey with whom you can develop a trusting relationship. Never be afraid to seek a second or third opinion.

We are all on this journey together. We all belong to a club that we didn’t volunteer to join. Select your resources wisely. I do so because it is another way to make every breath count.


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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Steven Dragoo avatar

Steven Dragoo

It is natural to have hope against this dreadful disease and part of that is grabbing what looks good on the Internet.

I do take a lot of supplements but research carefully and look again about every 6 months for new insights. This has helped me a lot.

Thanks for opening this up Samuel...
Steve

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Samuel Kirton avatar

Samuel Kirton

Steven,
Thanks for your comment. Hope is an important part of dealing with PF and any other rare disease. Sadly, so many rare disease communities are targeted by people with less than desirable scruples.
Sam ...

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