Take advantage of the opportunity to increase rare disease awareness

A columnist shares ways to make your voice heard on Rare Disease Day

Samuel Kirton avatar

by Samuel Kirton |

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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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Why I do rare disease awareness and advocacy work on Capitol Hill

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.


Janice Ruth Moore avatar

Janice Ruth Moore

It's so very important to publicise the effects various diseases have on patients, and for pressure to increase in finding therapy and in time a cure. Until my diagnosis last April I had no idea that this condition existed and certainly no knowledge of the life changing effects it would have on my hopes and plans for the future., people who knew me previously have been unable to deal with the outcomes.

Samuel Kirton avatar

Samuel Kirton

Thanks for reading my column and for you comments. So many diagnosed with this disease were only introduced to it by their own diagnosis. It is difficult for many people to deal with a patient who has a chronic progressive disease for which there is no cure. While others will be aware of the disease and rally around you. Please come back and let me know how you are doing.

Sam ...

John Fromularo avatar

John Fromularo

Thank you for writing this article. I was diagnosed with IPF in May 2020. Last year it was changed to scleroderma pulmonary fibrosis after they found I had scleroderma. I'm still learning about my "new normal". I live in Pensacola Fl and there are no groups down here focused on PF. This newsletter is really my only outlet to others with this disease. I am a retired Marine and this was unexpected. I am surprise dot hear you had the bilateral lung replacement so quickly and delighted to hear you seem to be doing well. I imagine that is very scary.
Please keep writing about your journey so others can tag along.

Samuel Kirton avatar

Samuel Kirton

Thanks for reading my column, your note, and for your service. I would like to help you find a support group. Can you tell me a little more about the type of support group you are looking for?

Sam ...


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