This month is our time to raise awareness about rare diseases

What do blue lobsters, green eyes, and idiopathic pulmonary fibrosis (IPF) have in common? At first glance, they may seem unrelated, but each represents something rare and extraordinary. Imagine a game board with the overarching theme of rarity, featuring categories such as unusual sea creatures, unique physical traits, and uncommon diseases.

When I was diagnosed with IPF in January 2017, I’d never heard of the disease. IPF affects only 13 to 20 people per 100,000 worldwide, an incredibly small percentage. According to MedlinePlus, about 100,000 people in the U.S. are living with IPF. It is, by every standard, a rare disease.

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February 17, 2026 Columns by Samuel Kirton

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Why we are valuable

Familial pulmonary fibrosis is the rarest form of IPF. In my case, there was no known family history until September 2024, more than seven years after my own diagnosis, when I learned that my brother Mark had also been diagnosed.

In our society, rarity often equates to value. Take rare earth metals, for instance. Despite the name, not all are truly rare or even metals. Gold and platinum are considered genuinely rare, with gold trading at around $2,100 per ounce and platinum at about $1,000 per ounce as of last week.

But in the world of rare diseases, there are no price tags or trading markets. Instead, what sets us apart is the uniqueness we each possess, and, in my view, that makes us incredibly valuable.

Each of us potentially holds a clue to the rare disease we carry. IPF chose me. I remember sitting with my care team, reviewing potential causes of my lung fibrosis, including coal dust, asbestos, radiation, and birds in the home. But none applied to me.

Rare Disease Day is observed on the last day of February — not to spotlight a single rare disease, but to honor all rare diseases worldwide.

We all belong to an exclusive club that no one chooses to join. Soon after my diagnosis, I resolved not to go quietly into that good night. I became active in the rare disease community and realized I was not alone in my unfamiliarity with IPF. Aside from my clubbed fingers, I appeared healthy.

As I learned more about IPF, I began to share my experiences openly. Diagnosed at 59, I left the workforce on disability just before turning 60. I chose not to be angry but rather to get involved. An early journal entry of mine, boldly written, read: “BE POSITIVE IN ALL THINGS.” That mantra became my guide as I shaped a new future.

I shared my story at every opportunity. Countless times, I heard, “You don’t look sick.” Since my diagnosis, I’ve found my voice by speaking with patients, caregivers, support groups, future medical professionals, pharmaceutical companies, and lawmakers. Through my column here at Pulmonary Fibrosis News, my story now reaches people wherever there’s an internet connection.

This Saturday is Rare Disease Day. I encourage you to find your own voice by visiting the official site, reading other people’s stories, and, if you can, sharing your own story. Some 300 million people worldwide are affected by rare diseases. Even sharing your experience with just one person can raise awareness, highlight the need for more research, and move us all closer to better treatments and a cure. Together, we can help 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.