Elise (1) will have held back her tears until this last (and clumsy) question about her future. “I don’t have one. How could I have one in my condition!”, she sobbed, as she painfully sat in front of us. Her mother, Sabine, breaks the silence that follows this cry of despair by recalling that all they want today is a course of care, after two years of wandering, from one specialist to another, in the hope of treating these new symptoms which have made the life of the young 29-year-old Riviera woman hell. It all started for Élise in 2017. The student, who after graduating from the School of Fine Arts in Monaco, trained in audiovisual, was very complexed by her protruding ears and decided to have surgery. A simple otoplasty. “But straight after the operation, I started having pain in one ear.” “You’re not massaging your ear enough,” the doctor replied. Nothing will help, the pain does not leave her, and she will have to live with it for 4 years. “I ended up getting used to it, telling myself that it was simply the price to pay for this cosmetic operation. “.
October 7, 2021, a date engraved in his memory
Summer 2021. His pain is getting worse, and a pimple appears on his oozing ear. “I first had an antibiotic ointment, then, orally.” Nothing works. The young girl then turned to an ENT surgeon who, on October 7, 2021 – the date is definitely inscribed in her memory – prescribed her Ciflox, an antibiotic from the fluoroquinolone family. “I did not even look at the leaflet; my confidence in medicine was total, for me, when a doctor prescribes a drug, it is because it is justified.”
The doctor will not alert him to any of the side effects of these molecules (however well known) nor the precautions for use. “When the pharmacist gave me the medicine, he simply told me not to expose myself to the sun, because of photosensitivity, and not to do any sport, this antibiotic increases the risk of tendon rupture. ” But, five days after the start of treatment, these are completely different signs that will generate real panic in Elise. “Multiple pimples appeared on my cleavage, but above all I felt intense burning in my stomach and intestines. I had blood in my stools, I felt intense fatigue.”
The secretary tells him to stop the treatment
Frightened call to the doctor. It is his secretary who will tell him to stop the treatment immediately. She will not discuss with the doctor. Time passes, Élise still has strange symptoms, she has interrupted all activities. And his ear is still not healed. She went to the IUFC (Facial and Neck Institute) in Nice and the doctors did not hide their concern from her. “They feared a serious illness, cancer, I only found out afterwards.” She finally gets an explanation for her incessant pain: “ The absorbable suture – designed to break down over time – had not resorbed, and had damaged the cartilage.”
Finally taken care of, Élise is definitely treated. Of his ear problems. “But I continued to experience intense fatigue, I still had blood in my stools, I was getting weaker and weaker.” Unconcerned until now by her physical health, Élise now consults the Internet frantically. “I felt that it was not normal, and it worried me. I imagined everything, until the existence of an STD (sexually transmitted disease). “His parents helplessly witness his descent into hell. They wonder too. His mother knocks on all doors, does research on the web. “That’s when I started coming across articles about the adverse effects of taking fluoroquinolones.” When she talks to Elise about it, she refuses to accept it. “I couldn’t imagine for a moment that a drug could do any harm. It seemed impossible to me”confesses the girl.
“As if a truck had run over me”
But, in December 2021, i.e. two months, after taking the antibiotic, an additional level is crossed. “I began to vomit in jets; I couldn’t even swallow water. And it hurt all over, as if a truck had run over me. Unbearable pain in the anus also appeared , in addition to the bleeding. And above all, I felt that something was happening at the neurological level. I felt like I was drugged, drunk, I saw blurry, I had no memory, I I couldn’t even think anymore… And all the light, all the noise became unbearable. …My parents thought I was going crazy.”
His parents are especially desperate. They are afraid. Life flees from the body of their daughter, she herself begins to call death her wishes. Examinations will highlight UC (ulcerative colitis). “I begged the gastroenterologist to order me an MRI of the brain too, I needed to know.” Subsequently, as new symptoms intrude, Elise will also undergo a lumbar puncture. “I was so freaked out… I thought of multiple sclerosis, and even early Alzheimer’s… When the MRI came back normal, the doctor said to my parents, ‘Your daughter is doing it for you. ‘towards…”” Her parents, who experience Elise’s ills on a daily basis, have no doubt about their reality. And they will obtain his hospitalization in an internal medicine service. But still no word on his many troubles. “They were all focusing their research on the presence of autoantibodies, and not finding it, telling me they couldn’t conclude anything.”
“You were a smart girl…”
Elise, a great reader, can no longer read a line, she lives recluse in her parents’ house. “I said to myself: ‘you’re a smart girl, you had lots of ambition, plans, are you going to have to agree to end your life, moron?'” The following? A stay in a long Covid service in Mougins – “We also thought about that”. “For the first time, I met a benevolent doctor, who knew how to listen to me.”
Until diagnosis of bipolarity
The next step: a neuropsychological evaluation by the psychiatry department of Pasteur Hospital. Who will conclude that… the existence of a bipolarity! “I could have heard this diagnosis, if I had been told: “we will treat you for that but we will also take care of all your other symptoms: pain in the bones, in the skin, terrible headaches, tinnitus…” » Outraged by the diagnosis; Elise’s GP will refuse to prescribe mood stabilizers. Fortunately, since January 2023, Elise is no longer alone with the disease. Thanks to her mother, who has never overlooked any lead, she is now in contact with Philippe Coville, president of the association for help and information on the deleterious effects of Fluoroquinolones. (2). For him, there is no doubt that Élise was indeed the victim of the already known serious (rare) adverse effects of these antibiotics.
The Azurean evokes a serious trauma, and cries to be forced, at the age of 29, to live with her parents, assisted, deprived of any social life and without hope in the medium term to reconnect with a professional life. Because if her cognitive disorders and her intolerance to sound and light have improved, she continues to present major sequelae – her handicap is evaluated between 50 and 80% “with violent headaches, tinnitus, burning in and on the body and joint pains which force her to remain bedridden almost permanently”. While the association chaired by Philippe Coville is calling for the opening of a criminal investigation into the responsibility of the health authorities, mother and daughter today want to testify so that there are no other victims. So that no mother has to fight like Sabine to prevent her child “to go to Switzerland or Belgium to shorten his suffering because [elle n’a] more prospects for the future. “The lack of recognition of her health problems has plunged my daughter into a permanent state of sadness, she no longer trusts the medical profession”. This precious confidence that would allow him to reconnect with life. A “life that ended on October 7, 2021”.
(1) The first name has been changed.
(2)