Take advantage of the opportunity to increase rare disease awareness

For many years, my relationship to the rare disease community was that I had stepsiblings with ataxia, a neurological condition without a cure or effective therapy. Little did I know I’d one day have my own rare disease.

In January 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF), a progressive interstitial lung disease with no cure. My path to diagnosis began in the fall of 2016 with a cough. I hadn’t been regularly ill, and I’d never heard of IPF, so the diagnosis was a complete surprise to me.

When I began to share the news, I quickly realized that most other people had never heard of IPF, either. This lack of understanding isn’t unique to the pulmonary fibrosis community. With more than 7,000 rare diseases affecting 25-30 million people in the U.S., 1 in 10 Americans could face a similar quandary.

As I learned more about my disease, I recognized an opportunity to raise awareness — not only among my immediate circle of family and friends, but also on a larger scale. The latter is made possible through events like Rare Disease Day, observed annually on the last day of February.

This observance is intended to raise awareness of rare conditions and the issues they pose. This year’s event on Feb. 29 is even more special because it’s a leap year.

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You can help raise awareness

How do you respond when someone says they’ve never heard of IPF? Do you fumble for a response, making it up as you go along, or do you have a polished answer that fully explains the disease?

Most of us, including me, could use some improvement in this area. After my diagnosis, I used the word “terminal” to describe IPF. But as I learned more and became more comfortable with my prognosis, I began changing the tone, and then the content, of my message.

I began describing IPF as a chronic, progressive lung disease for which there was no cure. Only two drugs are approved by the U.S. Food and Drug Administration to treat it: the antifibrotics Esbriet (pirfenidone) and Ofev (nintedanib).

Those changes made my message less scary. It’s frightening to hear that a disease will result in death.

Want to improve your awareness messaging? Even if you’re not one of those whose life calling is to write speeches, there are still some simple ways to do so. While the most obvious suggestion is to practice, many find it helpful to first learn how to craft a message.

Look to organizations like the Pulmonary Fibrosis Foundation (PFF) and research their advocacy programs. Getting involved in a formal program can help you craft and personalize your message.

An additional benefit is having the opportunity to share your story with your elected representatives, the very people who have the ability to legislate change. Your story, told in your words, is a powerful tool to influence that change.

I’ve used my voice, for instance, to advocate for supplemental oxygen reform. I relied heavily on oxygen during my IPF journey. Before my bilateral lung transplant in July 2021, I was using 7 liters per minute (lpm) to walk across the room. I relied on a 10-lpm oxygen concentrator at home and multiple portable cylinders when I went out. There were better solutions.

As part of PFF Hill Day on March 6, advocates are asking members of Congress to support supplemental oxygen reform, which would improve its accessibility under Medicare. Our patient stories are valuable.

In addition to oxygen reform, our community needs more research and a better standard of care — especially for those in medically underserved communities. What are you doing this Thursday to raise awareness of IPF and the issues we face?

Rare Disease Day provides patients an opportunity to rise up and be heard. Take advantage of the opportunity to raise awareness of rare diseases. Making my voice heard is another way I can 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.