St. Gowdens. Father’s fame against rare pathology

His journey began on 12 April in Copenhagen. Since then, Patrice Abella has traveled more than 2,500 kilometers across France. On 5 July, he left Saint-Goudens a fortnight before the Tour de France for his 17th stage. This father of four has created the sporting challenge of a 90-day tour of France by running, not by bike. She has now been running close to her heart for three months for a reason: a congenital sensitivity to pain, a pathology from which her two youngest daughters are suffering. “It’s a pathology that results in the absence of pain perception,” explains Patrice Abella. Seemingly superpower. But from a young age, the two young women have suffered serious consequences. “Today, they can no longer walk properly due to microfractures in the knee. They accumulate infection because healing is slow, so much so that one of them has lost a phalanx on each finger due to bacteria,” he added, adding: “It’s not just a disease, it’s a whole. It’s a disease. We have to consider the psychological and social aspects as well. “

A sports challenge for communication

CDI is so rare that little research has been done on it. So the pathology for Patrice Abella’s two daughters is rarely known, including with doctors, sometimes lacking a solution. “When I started, there was no documentation of CDI because very few patients become adults. It’s not easy for a father to hear it,” he recalls. So, a year ago, he decided to form the Coralizée Association and organize the Tour de France within 90 days: “I wanted an extraordinary event that involved long-term communication on the subject. De France was a good base.” A real decision for this father who until then forbade his daughters to talk about pathology. He explains: “It was to protect them from other children who might want to test their pain resistance, for example, or not to face the eyes of others. But in the end, people need to know, so as not to be mistaken.” Beyond the achievements of such sports, he now seeks to raise awareness about the existence of this pathology and for better care for patients. “In the first 16 steps, I met with patients who were able to talk about CDI and tell them about their daily lives. Sharing evidence could lead to progress in research to try to find solutions, especially on outcomes,” said Patrice Abella. . Because the main goal is not so much to find a cure, non-existent to this day, which adds sensitivity to the sick. Discovering the causes, unknown to the two young girls, and guessing the consequences of pathology is essential today. “By alerting the community, schools, hospitals, we can report the pathology and thus avoid justice. Some families have been convicted by the medical profession who have noticed frequent injuries to their children’s bodies,” he explained.

Round field-

July 25 Elise

The father of the family, a computer engineer from Toulouse, has set aside his work for three months to fully engage himself in the project, which he has been preparing for a year. “I’m not a top athlete, so preparation was important. The start was difficult. I often injured myself when I couldn’t stop.” But the most complicated thing for Patrice Abella is being away from her family for weeks, and especially from her two daughters, one of whom is currently hospitalized. Despite the difficulties, he emphasized the “humanely strong” side of his approach: “There have been beautiful encounters on the tour, with patients but also with people who don’t know the pathology or the athletes who joined me.” For the end of the project, he kept in mind the goal of moving forward. In the final stage, in Paris, he will be overtaken by the riders of the Tour de France. An event is counted to promote the reason he fights. He wants to go further and increase communication around the subject. “I’m optimistic and I don’t want to cry about it. As a parent, I want to tell myself that I’ve done everything necessary for my children.”

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