My journey with cardiomyopathy
My name is Caroline Bonis. I’m 46 years old, I live in Brittany, and I’m an actress. I’m also Vice-President of the Ligue contre la Cardiomyopathie.
From the age of 18 to 40, I was clearly in diagnostic odyssey. For years, I didn’t really have answers.
Then one day, my doctor detected a heart murmur. Everything happened very quickly after that. By mid-June, I had a defibrillator implanted. It was very hard. You don’t expect to hear all of that in five minutes.
Learning to live with a device
You have to accept it physically — having this inside your body.
At the beginning, you look at yourself in the mirror, and you see it. At the hospital, they told me: “See it as a guardian angel.”
Honestly, I didn’t leave thinking I had a guardian angel. But today, if someone told me they were removing it, I would be afraid. It’s my lifeline.
Becoming the support I didn’t have
I trained in therapeutic patient education because I wanted to help people who find themselves in the situation I was in. I hadn’t found anyone my age to talk to.
During that training, I met another patient with hypertrophic cardiomyopathy like me. He had written a book. Together, we decided to write a theatre play inspired by his book, adding other characters and different journeys. Because even when you have the same disease, you don’t live it the same way.
"We can have the same disease and not live it the same way."
Rebuilding connection
During my training, I met Prof Philippe Charron, who introduced me to Louise, a young transplant patient. We had the same energy, the same desire to help people and to bring life back to the association — to support patients and their families. Nicolas joined the project too.
We want to relaunch patient information days. We want to show that you can be ill — and still live well.
With Mended Hearts Europe, we are working on adapting a peer-support programme that already exists in the United States. Patients are trained to support newly diagnosed patients.
We are building it together. We are decision-makers too. We work closely with cardiologists who are part of our scientific council. It’s something we truly do together.
To those who have just been diagnosed
I would say: come closer, reach out – get in touch with us, with the Ligue contre la Cardiomyopathie. We are here for you.
The more of us there are, the louder our voice will be. The more the disease will be understood and visible.
You will meet healthcare professionals in a different setting. You will meet other patients. You will discover what cardiomyopathy really is — beyond fear.
You are not alone. And you can live well.
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