“The phrase I’ve heard the most is ‘drink water,'” laughs 31-year-old Laetitia Defoi. This advice, my mother knew… Mayit’s 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 every 1,300 newborns in our country. However, this disease, which affects red blood cells and causes brutal and intense pain throughout the body, remains largely unknown. This makes it difficult to manage and complicates the lives of patients.
Four years in a wheelchair
Laetitia’s journey is proof of this. “Since I was born they told me that she was going to die at the age of 5. Then at 10, at 15. At that time, nobody around me knew much about this disease”, summarizes the 30-year-old. At 10, this Martiniquaise started having leg pain and a limp. When she skips school, she is suspected of faking it. “One day, my mother asks me: ‘Does it really hurt?’ She 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 Orleans, so that I could see a doctor. »
It was then a series of hospitalizations… and four years in a wheelchair. Her mother finds a suitable university, with students also in wheelchairs. Despite everything, “it was then that I became aware of my illness,” she continues. And that I faced discrimination. Not because he was in a wheelchair, but because he had sickle cell disease. “A disease that worried her teachers a lot. “When my class could go on field trips or trips, they never let me go. Same for my third year internship. I understood that there was something about him that scared people. »
“I was having terrible seizures so I was failing exams”
In high school, Laetitia is able to walk again. “It’s a renewal,” she breathes herself. But that does not mean the end of rejection and false accusations. She “she was having terrible seizures, so she was failing her exams. Since I drink a lot, I had to go to the bathroom often, but the teachers wouldn’t let me urinate or take my medicine in class. They told me “you are not above the rest”, “you will never have your high school diploma”. For a long time, Laetitia was promised failure. Never discourage her.
With the baccalaureate in hand, he went to Paris as quickly as possible. “In 2009, for the first time, I was monitored and cared for, despite the fact that I spent two years chaining crises. Fortunately, she gets a reprieve a few years later. She then took the opportunity to realize her dream: to become a nurse. A desire born during a long stay in the Orleans hospital, a few years earlier. “I stayed there for months and found a good surgical team. I started to like the world of skin care. Being a nurse, I was able to better help myself and others. With her diploma in hand, she works in the hospital, she continues with a master’s degree in public health in 2017, she starts at the Sorbonne at the patient university to graduate from patient-expert. And since that’s not enough for someone who has long been accused of “laziness,” he launches an app with two friends, drepacareto help patients through a virtual assistant, on the laptop.
“The pain is sometimes so violent that you feel like you are dying. »
After a hip replacement operation 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.” Then she spends days in the ER waiting for someone to listen to her, to trust her, to comfort her. And although her pain leaves her alone, her bones, her eyes, her whole body is so damaged that she suffers too. osteonecrosis (a bone disorder related to poor blood supply) and other complications. “Last summer I had an ulcer and a retinopathy, that is, lesions at the back of the eye. »
Currently, when she is treated at her hospital in Pontoise, things are going well. In other places it is more complicated. It must be said that sickle cell disease is not always taught in nursing school, it is quickly addressed during medical school. “However, the complications are so great that ER doctors, ophthalmologists and general practitioners should all be trained,” she insists. Thus, strong in the double role of nurse and patient-expert, she preaches her benevolence in the hospital, in nursing training. And she tries to deconstruct harsh prejudices.
“Who better than us to talk about sickle cell disease? »
Because of the clichés about her illness, Laetitia has heard tons of them. People with sickle cell disease are sometimes called “sorcerers”, “junkies” because they are hard to bite. “Lazy” because they endure constant and incapacitating 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 would not 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 bugs her: ‘We hear a lot that sickle cell anemia is ‘a black disease,’” she laments. It’s false ; “More black people have this disease, but it comes from India, Africa and all over the Mediterranean, I have white friends who have it. The last time a white friend had a seizure and she was in the hospital, when she said she had sickle cell anemia, she was told ‘impossible.’
So, to expose this disease, Laetitia, in addition to her double job, openly testifies on social networks. “When I wanted to talk on Facebook with someone who suffers from sickle cell anemia, they asked me ‘this is the first time I see someone show this disease, put their photo, are you not afraid?'” But who better than us to talk about sickle cell disease? We have to get involved to make this happen. »