“The phrase I’ve heard the most is ‘drink water’,” laughs Laetitia Defoi, 31. This advice, my mother knew it… Mays not much more. The young woman suffers from sickle cell disease, a rare genetic disease… yet the most common in France. Indeed, between 20,000 and 32,000 people suffer from this pathology, which affects one in 1,300 newborns in our country. Yet this disease, which affects red blood cells and causes brutal and intense pain throughout the body, remains largely unknown. This hinders its management and complicates the lives of patients.
Four years in a wheelchair
Laetitia’s journey is proof of this. “Since I was born, I was told that I was going to die at 5 years old. Then at 10, at 15. At the time, no one around me knew much about this disease, ”sums up the 30-year-old. At 10, this Martiniquaise began to have pain in her leg and to limp. When she misses school, she is suspected of pretending. “One day, my mother asks me: ‘Are you really in pain?’ I said yes, and she believed me. Little by little, I realized that everything was disappearing in the house. She sold everything so that we could go to France, to Orléans, so that I could see a doctor. »
It was then a series of hospitalizations… and four years in a wheelchair. His mother finds a suitable college, with students also in wheelchairs. Despite everything, “that’s when I became aware of my illness,” she continues. And that I faced discrimination. Not because I was in a wheelchair, but because I had sickle cell disease. “A disease that greatly worried his teachers. “When my class was able to go on an outing or on a trip, I was never allowed to go. Same for my 3rd year internship. I understood that I had something that scared people. »
“I was having terrible fits, so I was failing exams”
In high school, Laetitia can walk again. “It’s a renewal,” she breathes. But that doesn’t mean the end of rejection and false accusations. “I was having terrible fits, so I was failing exams. Since I drink a lot, I had to go to the bathroom often, but the teachers wouldn’t let me pee or take my medicine in class. They told me “you are not above the others”, “you will never have your baccalaureate”. For a long time, Laetitia was promised failures. Never discourage her.
With her baccalaureate in hand, she left for Paris as quickly as possible. “In 2009, for the first time, I was monitored and cared for, even though I spent two years chaining crises. Fortunately, she has a few years’ respite afterwards. She then seized the opportunity to realize her dream: to become a nurse. A desire born during a long hospital stay in Orleans, a few years earlier. “I stayed there for months and I came across a good surgical team. I started to like the world of skincare. By being a nurse, I could help myself and others better. With her diploma in hand, she worked in the hospital, continued with a master’s degree in public health in 2017, started at the Sorbonne at the university of patients to obtain her diploma as a patient-expert. And as that is not enough for the one who has long been accused of “laziness”, she launches with two friends an application, Drepcare, to help patients thanks to a virtual assistant, on the laptop.
“The pain is sometimes so violent that you feel like you are dying. »
After an operation for a hip prosthesis in 2016, his disability becomes invisible. But crises are never far away. “The pain is sometimes so violent that you feel like you are dying”. She then spends days in the emergency room waiting for someone to listen to her, to trust her, to relieve her. And even when the pain leaves her alone, her bones, her eyes, her whole body are so damaged that she also suffers from osteonecrosis (a bone disorder related to the lack of blood supply) and other complications. “Last summer, I had an ulcer and retinopathy, that is to say lesions at the back of the eye. »
Currently, when she is taken care of in her hospital, in Pontoise, things are going well. Elsewhere, it is more complicated. It must be said that sickle cell disease is not always taught in nursing school, quickly approached during medical school. “However, the complications are so vast that the emergency doctors, ophthalmologists and general practitioners should all be trained,” she insists. So, strong in her double role of nurse and patient-expert, she preaches benevolence in the hospital, in nursing training. And tries to deconstruct tough prejudices.
“Who better than us to talk about sickle cell disease? »
Because clichés about her illness, Laetitia has heard tons of them. People with sickle cell disease are sometimes called “sorcerers”, “drug addicts” because they are hard to bite. “Lazy” because they endure constant and disabling fatigue. “I have chronic anemia,” she explains. Which means I have few red blood cells that carry oxygen. A normal person has an average of 13 grams of hemoglobin per deciliter of blood, I live with 7. A healthy person wouldn’t even be able to get up. When I take the stairs for a floor, I have the impression of having run a marathon! “Another cliché that annoys her:” we hear a lot that sickle cell disease is “a disease of blacks”, she regrets. It’s wrong ; “more black people have this disease, but it comes from India, Africa and around the Mediterranean, I have white friends who suffer from it. The last time a white friend had a seizure and was in the hospital, when she said she had sickle cell disease, she was told ‘impossible’.
So, to highlight this disease, Laetitia, in addition to her double job, testifies openly on social networks. “When I wanted to talk on Facebook with someone who suffers from sickle cell disease, I was asked ‘it’s the first time I’ve seen someone display this disease, put their picture, you’re not afraid ?” But who better than us to talk about sickle cell disease? We have to get involved to make it happen. »