Miss Diagnosed
Meet Caroline
After years of breathing difficulties, dizziness, fatigue, and other symptoms attributed to asthma, whiplash, pregnancy, and stress, Caroline was diagnosed with severe apical hypertrophic cardiomyopathy. Now, as a patient advocate and theater creator, she works to ensure that patients are heard and no one faces cardiomyopathy alone.
Patient Story Misdiagnosed
Breathing difficulties · Dizziness · Faintness · Fatigue · Abnormal heartbeats
Stress of daily life · After-effects of whiplash · Allergic asthma
OR
Apical hypertrophic cardiomyopathy · Aneurysm · Fibrosis?
Caroline’s Story
Hi, I’m Caroline Bonis.
I’m 46 years old, an actress, and a director. In June 2020, I was diagnosed with apical hypertrophic cardiomyopathy (HCM), a diagnosis that put an end to many years of medical wandering.
At the age of 20, I began to suffer from respiratory problems. I was then diagnosed with allergic asthma and prescribed Ventolin, but my symptoms persisted.
Over the years, dyspnea—breathing difficulties—became recurrent, accompanied by episodes of tachycardia and severe dizziness.
These were wrongly attributed to the after-effects of a previous whiplash injury.
Podiatrists, physiotherapists, osteopaths… they tried everything… in vain.
My two pregnancies, in 2010 and 2013, were difficult, marked by fatigue, malaise, and breathing difficulties, which were systematically attributed to the pregnancy.
Subsequently, I developed gastric problems and feelings of oppression. I consulted numerous specialists, including a gastroenterologist, only to be told that all my ailments were related to the stress of my daily life.
It was in 2020, in the midst of the pandemic, that a new general practitioner, during a simple consultation, mentioned a heart murmur and referred me to a cardiologist.
Finding the Diagnosis
In May 2020, the first cardiologist confirmed the existence of a problem, describing it as asymptomatic HCM, and referred me to the CRMR in Rennes to see Professor Donal’s team for a more precise diagnosis.
After several tests, the diagnosis was made: severe apical HCM with a small aneurysm.
Considered at high risk of stroke and sudden death, I was immediately placed on anticoagulants and beta-blockers.
Ten days later, I was implanted with a subcutaneous defibrillator.
During all those years of wandering, my heart had weakened; fibrosis was diagnosed.
Psychologically, this period was extremely difficult. Everything was sudden and violent, but what shocked me most was the feeling of not having been properly listened to in the past.
I believe that early treatment could have been considered if some doctors hadn’t minimized my symptoms.
My HCM is genetic. I am what is called the index case in my family.
Once the genetic mutation was identified, other members of my family were diagnosed. One of my children is also a carrier, and appropriate follow-up was put in place.
Since then, I have decided to get involved by training in patient therapeutic education and, along with three other patients, taking over the League Against Cardiomyopathy.
My goal is to ensure that no patient faces this disease alone and to ensure that doctors take patients’ voices into greater consideration.
Turning the Story Into Advocacy
With Nicolas Desroches, we also co-wrote a theater show, “BATTEMENTS CONTRAIRES,” which tells our stories and those of other patients interviewed.
We will present this show, currently being created, in Rennes for the first time on February 6, 2026, with the hope of performing it as widely as possible to raise awareness among caregivers, patients, caregivers, and the general public about this rare disease, which remains a major public health issue.
Terms to Know
Caroline’s organization: La Ligue contre la Cardiomyopathie. Follow @laliguecardiomyopathie.
Caroline lives in France, and her play will premiere there.
Caroline’s play title translates as “Contrary Beats.”
CRMR: The acronym for Centre de Référence des Maladies Rares, a center for rare diseases in France.
Tachycardia: Having abnormally fast heartbeats—over 100 beats per minute while resting for an adult.
Apical HCM, or AHCM: A rare form of HCM. The heart is abnormally thick at the top of the left ventricle.
Extrasystoles: Premature heartbeats that happen before the heart’s normal rhythm.
Aneurysm: A bulge or dilation in the wall of a blood vessel. It could lead to rupture, which could result in death or disability.
Cardiac fibrosis: When the heart muscle is stiff and scarred.
Ventolin: A brand of albuterol, which is a bronchodilator and can have side effects.