Living with idiopathic pulmonary fibrosis: Jean-Michel's journey of strength, advocacy and hope

Idiopathic pulmonary fibrosis (IPF) is a chronic, life-threatening interstitial lung disease (ILD) that is associated with worsening respiratory symptoms and reduced quality of life. There are approximately 1.4 million people living with pulmonary fibrosis globally.

Jean-Michel Fourrier’s story is one of both devastating reality and inspiring purpose. Diagnosed in 2017, he has been living with IPF—a rare, progressive and ultimately fatal lung disease—for eight years. But he is not merely surviving. He is leading, fighting and speaking out for those who can’t as the president of the Association Fibroses Pulmonaires France (AFPF).

“From the very beginning, you know the disease will win and you will lose.” These words, spoken quietly yet with unwavering honesty, come from Jean-Michel—a 65-year-old father, grandfather and advocate for people living with IPF.

Jean-Michel’s Journey with IPF

Jean-Michel never expected a routine health check to change the course of his life. Living near Bordeaux, France, Jean-Michel was a healthy, active 57-year-old. “I didn’t feel sick. I was thinking I was in good health,” he recalls.

However, during a standard check-up, his cardiologist heard something unusual—not in his heart, but in his lungs. That incidental finding led to months of various tests before finally receiving a diagnosis.

Eight years later, Jean-Michel is still navigating life with IPF—and doing everything in his power to help others do the same.

IPF is often mistaken for natural age progression. “Fatigue and a bit of breathlessness—these are not very worrying symptoms when you’re 60,” Jean-Michel explains. “You think it's due to your age, but I am convinced that cardiologist saved my life. If he didn’t listen to my lungs, maybe I would be dead today.”

The disease has chipped away at his independence over the years. “It’s the little things in daily life,” he says. “Climbing stairs, carrying groceries, walking even slowly—those things become more and more difficult.” For the past three years, Jean-Michel has needed supplemental oxygen during physical activity.

Jean-Michel emphasizes that when it comes to treatment, there needs to be options that address symptoms like cough, fatigue and breathlessness. Jean-Michel says, "It's really painful. It is physically painful but also mentally painful.”

But what hurts most isn’t always physical. It took time to accept that his journey would be shared—not only with his family, but eventually, with the wider IPF community.

From silence to support

When Jean-Michel was diagnosed, there were few resources available in France. “I felt so isolated,” he remembers. “They tell you that you have pulmonary fibrosis and you go home with this diagnosis and a lot of questions but no answers.”

Jean-Michel joined a then-dormant French patient group and helped breathe new life into it. That group is now the AFPF.

AFPF works across three core pillars: supporting patients and families, educating healthcare professionals and the public and supporting research. As president, Jean-Michel has been a voice at congresses, scientific meetings and peer support groups for newly diagnosed patients.

“We participate in athletic events, walking 5K [races] with oxygen tanks to make the disease visible,” he says. “It’s powerful. People stop and ask questions. That’s awareness.”

Despite progress, Jean-Michel is clear: the system is still failing too many patients with several critical barriers including delayed diagnosis, long waiting lists at specialized centers and slow access to new treatments.

Jean-Michel expressed concerns that current treatments may have some side effects and, as a result, may not be positively impacting quality of life for people living with pulmonary fibrosis. “What I would like is to get a treatment that is able to stop the progression,” he says.

A life rewritten

Jean-Michel’s life looks very different than it did before his diagnosis. He stepped away from a successful career in management, not because his body gave out, but because his priorities changed.

Though IPF has taken much, it’s also given him something unexpected. “There is a life before the diagnosis and a life after,” he says. “I learned to enjoy every second. I learned to take care of others. To love better. And to surround myself with positive people.”

IPF has changed nearly every part of Jean-Michel’s life, demanding strength and resilience at every turn. But more importantly, he is still living.

Still showing up. Still walking 5Ks with oxygen. Still answering questions for the newly diagnosed. Still fighting for better care, better treatment options and better understanding.

For new patients, Jean-Michel has one message: “Join a support group. Learn. Ask questions. You can’t control the progression of the disease, but you can control how you live with it,” he says.

“There is hope,” he says. “And that hope matters.”