Mariette, 54 ans

I am Dutch and have lived in Toulouse since 1994. In January 2018, in the middle of the night, I had a heart attack by SCAD (Spontaneous Coronary Dissection). I couldn't understand it: I thought I was strong, athletic and healthy. How could this happen to me? I was lucky enough to live 5 minutes from a very good hospital, particularly in the cardiology field. Thanks to the expertise of the firemen, paramedics, doctors and nurses who ran around pushing my bed, I was much better in less than an hour.
It's been 4 years now and I'm fine. I count my blessings because I was lucky. The symptoms of my heart attack were recognizable and I was helped quickly. As a result, I suffered little damage. Still, it was difficult to get back on my feet: it took about a year. And I was alone with my questions. It was difficult to find information.
The first thing I found while I was still in hospital was a leaflet, written by Pr Claire Mounier-Vehier: Cœur, artères et femmes (Heart, arteries and women). Its contents really shocked me, especially that women are so vulnerable to cardiovascular disease. What's more, for patients, information on SCAD was hard to come by at the time. Six months later, I came into contact with a Dutch Facebook group, and even later with a French SCAD Facebook group.
I decided to create a website about SCAD in French: many French people don't speak English or don't want to get on Facebook. So I spent quite a few hours typing away on my computer. I sent my work for comment and correction to other patients, Gaëlle and Odile, and to an INSERM researcher, also a specialist in SCAD and DFM, Nabila Bouatia-Naji. There are also testimonials from patients who have undergone SCAD on our site. This is how www.SCADinfo.fr was born at the end of 2020.
I wanted to target this site primarily at women, because according to studies, SCAD affects 90% of women. The site and the group have two complementary functions. Appointments with doctors are often short and far apart. We patients have a lot of questions. The Facebook group is a closed group, not visible to others. It allows us to find support among ourselves. Support after a heart attack is a well-known vector for recovery. It's where we find the understanding and kindness we need. We can also ask our more or less innocuous questions at the time. We then regularly refer back to the site to answer those questions.
The SCADinfo site was born out of a desire for women who have had a SCAD to recover better and more resiliently after their heart attack, and to at least have answers to some of their questions, even if each of us is different: a doctor's opinion is always necessary. But patients who are better informed often have a better understanding of their disease, understand their treatment better and have better contact with their doctor.
The mechanisms of SCAD are not yet well understood. So how to prevent SCAD is not yet clear. But being aware that this disease exists is already important.
I'm so pleased with the "Women's Heart Bus" initiative. I also hope it will draw more attention to the urgent issue of heart health and women's health in general.