Laetitia, an expert on patients, talks about her fight against sickle cell disease

Laetitia Defoe, 31, laughs, “The phrase I’ve heard the most is ‘Drink water.'” This advice, my mom knew… MayNot much more. The young woman suffers from sickle cell disease, a rare genetic disease … but the most common in France. In fact, 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 severe pain throughout the body, is still largely unknown. This hinders its management and complicates the lives of patients.

Four years in a wheelchair

Leticia’s trip is proof of that. “Since I was born, I was told that I would die at the age of five. Then at ten, at fifteen, at that time, no one around me knew much about this disease,” sums up the 30-year-old. At the age of 10, this Martinique began to feel aching in her leg and limp. When she misses school, she is suspected of pretending. “One day, my mother asked 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 the doctor. »

Then it was a series of hospitalizations…and four years in a wheelchair. His mother found a suitable college, with students also in a wheelchair. Despite it all, “that’s when I found out about 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 deeply worried his teachers.” When my class was able to go for a walk or a trip, I was never allowed to go. Same thing for me in the third year of training. I understood that I had something to scare people. »

“I had terrible fits, so I was failing exams”

In high school, Laetitia can walk again. “It’s a renewal,” she breathes. But this does not mean the end of rejection and false accusations. “I had horrible fits, so I was failing exams. Since I drink a lot, I had to go to the bathroom a lot, but the teachers wouldn’t let me urinate or take my medicine in class. They told me ‘I’m not above others’, ‘You won’t get bac. For a long time, Leticia promised failure. Never be discouraged.

With her bac, she left for Paris as quickly as possible. “In 2009, for the first time, I was monitored and cared for, although I spent two years in a crisis sequence. Fortunately, I had a respite for a few years after that. Then I took the opportunity to fulfill her dream: to become a nurse. A desire born during a long stay in The hospital is in Orleans, a few years ago.” I stayed there for several months and met a good surgical team. I’m starting to love the world of skincare. By being a nurse, I can better help myself and others. With her diploma, she worked in a hospital, continued her master’s degree in public health in 2017, and started at the Sorbonne at the University of Patients to obtain a diploma as a patient expert. And since that’s not enough for someone who’s long been accused of “laziness,” I and two friends launched an app, Drepcare, to help patients thanks to a virtual assistant, on their laptop. In addition to being very active on social networks with @miss.letu.

“The pain is sometimes so violent that you feel as if you are dying.”

After undergoing hip replacement surgery in 2016, his disability became invisible. But crises are never far away. “The pain is sometimes so violent that you feel like you’re dying.” Then she spends days in the emergency room waiting for someone to listen, trust, and comfort her. Even when the pain leaves her alone, her bones, eyes, and entire body are so damaged that she also suffers from osteonecrosis (a bone disorder linked to a lack of blood supply) and other complications. Last summer, I had ulcers and retinopathy, meaning lesions in the back of the eye. »

Currently, when she is cared for in her hospital, in Pontoise, things are going well. Elsewhere, it’s more complicated. It must be said that sickle cell disease is not always taught in nursing school, and it is dealt with quickly during medical school. “However, the complications are so enormous that emergency physicians, ophthalmologists and general practitioners must all be trained,” she insists. So strong in her dual role as a nurse and patient expert, she advocates for charity in the hospital, and in nursing training. It attempts to dismantle strict prejudices.

Who better than us to talk about sickle cell disease?

Because of the clichés about her illness, Laetitia heard a lot from them. People with sickle cell disease are sometimes called “witches,” “drug addicts,” because they are hard to bite into. “Lazy” because they endure constant and crippling fatigue. “I suffer from chronic anemia,” she explains. Which means I have few red blood cells that carry oxygen. The average person has an average of 13 grams of hemoglobin per deciliter of blood, and I live with 7. A healthy person can’t even get up. When I go up the stairs to the floor, I get the impression I’m running a marathon! Another cliché that bothers her: ‘We hear too often that sickle cell disease is the ‘disease of blacks’, she laments. This is a mistake ; “More black people have this disease, but it comes from India, Africa and around the Mediterranean, and I have white friends who have it. The last time a white friend had an epileptic fit and she was in the hospital, when she said she had sickle cell disease. She was told, “Impossible.”

Therefore, to highlight this disease, Laetitia, in addition to her dual career, testifies publicly on social networks. “When I wanted to talk on Facebook with someone who had sickle cell disease, I was asked ‘It’s the first time I’ve seen someone showing this disease, put their picture up, are you not afraid?'” “But who better than us to talk about sickle cell disease? We have to intervene to make it happen.”



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