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Survivre à un AVC | Le témoignage de Fabiana

Lorsqu’il lui fallait un traitement, ce fut trop peu et trop tard pour Fabiana, 37 ans, dont l’AVC est devenu une catastrophe qu’elle aurait pu éviter. Onze ans plus tard, elle réfléchit à ce qu’elle a perdu, et ce que ses capacités désormais différentes signifient dans une société indifférente et intolérante.
Angels team 11 janvier 2024
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FABIANA Cinelli’s life changed at 9.30 pm on a Sunday in April 2012. 

The last thing she remembers is talking on the phone with her mom, then tucking her youngest son into bed and kissing him goodnight.

Minutes later her partner found her on the floor of the bathroom where she had gone to seek relief for a headache. Telling her story in a video recorded six years later, Fabiana raises the fingers of her left hand to her lips as if to unlock the word for ‘tablet’. 

Having been alerted at the same time as the emergency medical service, Fabiana’s parents were at the hospital when she arrived – by now unable to speak or move her right arm. 

No! no! they protested when the physician on duty enquired whether 37-year-old Fabiana was a drug user or hysterical: “She must have had a stroke. Do you understand what a stroke is?” 

Fabiana’s CT scan was normal – likely because the changes caused by the stroke were not yet visible on a non-contrast CT. CT angiography or an MRI, both of which the hospital was equipped to do, was not considered. Instead, a lumbar puncture was performed.

Hours later another physician came on duty and, finding Fabiana half-paralysed and mute, immediately diagnosed ischaemic stroke. He insisted that she should be moved to a hospital in Rome, but the wheels of interhospital transfer grinded slowly and by the time Fabiana reached Rome at around 1 pm on Monday, 15 hours had elapsed since she was discovered on the bathroom floor. 

“Imagine,” she says, pointing at her head, “the state my brain must have been in.”

Four months would pass before Fabiana went back home, and two years before she said her first word. The end of her marriage triggered the breakthrough. She walks the fingers of her left hand to demonstrate her former partner heading for the door. With no-one to speak for her, she had to find her own voice.

She started making little sentences – “Ho fame. Ho sete.” – like someone mastering the basics of a foreign language. But it got better day by day and soon, she says, she was able to ask for “an aperitif and can you add a little ice and a slice of lemon?”.

“Evviva!” she laughs, waving a fist. 

She laughs again as she recalls watching a UEFA Champions League game after life had begin to return to normal. “I sang!” she exclaims and launches into the Italian national anthem, keeping time with one finger. 

Fratelli d'Italia,
l’Italia s’è desta ... 

Stroke may have affected her speech and her gait, but it didn’t diminish her sense of humour or steal an ounce of her charm. Her strength is evident as she announces to the camera: “The youngest are the lucky ones in a tragedy. We are stronger. We have an objective in life. We have time, we have the memory of how to move a foot, move the other. Cognitively we are strong ... Let’s be together and give each other strength because the stroke cannot win.”

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JUST over a decade after Fabiana’s stroke, the hospital where she was admitted on 8 avril 2012, won an ESO Angels Award for stroke care – the culmination of a project that took five years and the dedication of four Angels consultants. 

Santa Maria Goretti Hospital in Latina is one of 14 stroke centres serving the 5,7 million citizens of Italy’s Lazio region, and among four hospitals that were designated to become hubs after the regional protocol was established in 2020. When Lorenza Spagnuolo first enrolled the hospital with Angels in 2018, they had treated only 34 patients and their door-to-needle time exceeded 100 minutes. Between 2019 and 2020, Elisa Salvati and Lorenzo Bazzani conducted training workshops and simulations, held multi-disciplinary meetings and reorganised the stroke pathway. Alessia Santori’s consultancy commenced towards the end of 2021. As well as enrolling Santa Maria Goretti in the quality monitoring project MonitorISA and working on standardisation and prenotification with the local EMS, she executed a regional strategy that included involving both hub and spoke hospitals in meetings and workshops, and bringing the Lazio stroke community together for an Angels Day that culminated in an action plan for the region.

A happy ending came into sight when Santa Maria Goretti Hospital collected two consecutive ESO Angels Awards in 2023. Elsewhere in the region, both new and established hubs are showing an interest in emulating the Latina network. 

It is often stated that a stroke patient dies or becomes permanently disabled every 30 minutes because they were taken to the wrong hospital. The aim in Lazio was to turn Santa Maria Goretti into the “right” hospital so that stories like Fabiana’s would always have better endings.

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FABIANA is now 48 and still lives in Latina where she works part-time in an office. In the five years since we last heard from her, she has made progress with speaking and walking. Early-morning walks now help her feel balanced and are opportunities to reflect on her life. She recently started walking to work. 

But she now also knows that “not letting the stroke win” goes beyond overcoming the neurological deficits after a stroke – it is also about seeking inclusion in an indifferent, impatient society.

A law graduate, Fabiana tried working at the local court but her disabilities made her colleagues uneasy and she left. She campaigns for a disabled-accessible society that is inclusive of differently abled persons, but says the rate of change is imperceptible, “at least in my province”. 

“We are still very invisible. I’m lucky because I can drive a car and walk, but public buildings and public transportation are not yet accessible to the many, many people who use wheelchairs. In general I think that society is not ready to understand us. No-one has patience when I speak badly or slowly. Other people who have suffered stroke agree that the only empathy we experience comes from our families and each other.”

Fabiana’s sons are now 21 and 11 and inevitably consumed by their own lives. She says, “Francesco and Andrea were close to me at the hospital during the very first recovery phase. I found strength in the love I have for them, and this helped me to get better. But I am afraid that they haven’t yet understood how to be close to differently abled people.”

Besides support from her father, who is also caring for her disabled mother, a “family” of stroke survivors helps Fabiana feel “closer and better understood”. She says, “I work hard to avoid sinking into depression and what helps me most is talking to young stroke patients. I don’t like to talk to normal people because I don’t feel like they can really understand.” 

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If Fabiana’s slow and deliberate speech makes some people feel uneasy, it’s likely her final words will unnerve them even more. Spoken as though every sentence is its own paragraph, her message is delivered with unusual clarity and force:

“We are not disabled. Each one of us, everyone, is differently abled. 

“What does it mean? 

“I have some issues with my speech.

“And the way I walk.

“And you? What is your problem?

“I am sure you have a problem, so we are all differently abled.

“But we know that our reason is a stroke.

“What is yours?”

 

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