Yasmine Candau, 51, is the author of the graphic novel Clara’s Endometriosis. Understanding the disease for 15-25 year olds (Dunod, 128 pages, 16.90 euros). Affected by this disease herself, the president of EndoFrance – an association of voluntary patients created in 2001 – discusses the challenges of taking into account this inflammatory and chronic condition of the female genital tract, which affects almost a women out of ten, i.e. 1.5 to 2.5 million people in France.
You have endometriosis, what was your background in the 1990s?
I lived a seven-year medical wandering during which I consulted my general practitioner, two gynecologists, a surgeon and a gastroenterologist. I carried out various examinations that I experienced as “barbaric”, from my 16 years to my 22 years, and which were useless since, with each result, “everything was fine”. Yet another doctor ended up saying the word “endometriosis”. It was both a relief, because I understood that what I felt since I was 16 was not “nothing”, but I also asked myself this question: “What do we do? I remember the doctor saying I was going to ‘play the guinea pig’ with treatment. I immediately tested artificial menopause, after strong treatments that are no longer prescribed today in view of the side effects.
You are the author of a comic book whose heroine, Clara, 17, discovers that she has this disease. Why did you choose a teenager?
Future generations must not experience the wandering that we have experienced. To prevent young girls from having this complicated life that their elders suffered, it is essential to carry out prevention from an early age. Very often, parents and doctors tend to play it down. This is also the first reflex of the mother of Clara, the heroine of the book. These mechanical reactions sometimes prevent a quicker diagnosis, even though this disease is the cause of many disorders: from school absenteeism to difficulties in intimate and romantic life.
In January, the President of the Republic affirmed that endometriosis was not “not a women’s problem” but “a social problem”. What do you think of this statement?
Our objective, when the association was created, was to bring endometriosis out of the shadows. We have been working for more than twenty years to raise awareness of this disease and support these women. Today, no one can ignore this invisible and taboo disease. So I put a lot of hope in these promises.
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