Achieving a father’s sport to talk about a rare pathology

To raise awareness of the congenital anesthesia that her daughters suffer from, Patrice goes through the stages of Abella Grande Baucal. 3328 km sports promise to make everyday life “without pain” familiar.

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,” Patrice Abella explains. Seemingly superpower. But from a young age, the two young women have suffered serious consequences. “Today, they can no longer walk properly because of microfractures in their knees. They accumulate infection because healing is slow, so that one of them loses a phalanx on each finger due to bacteria “, he explains before adding:” It is not a disease but a complete one. You also have to consider the emotional and social aspects. “

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 CDI documentation because very few patients become adults. It’s not easy for a father to listen, ”he recalls.

So, a year ago, he decided to form the Coralizée Association and organize the Tour de France within 90 days: I’m a cycling enthusiast so the Tour 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 have tried to test their pain resistance, for example, or could not face the eyes of others. But in the end, people need to know, so that there is no mistake. ”

Beyond the sporting achievements it represents, he now seeks to raise awareness of the existence of this pathology and for better care for patients. “In the first 16 stages, I met with patients who were able to talk about CDI and talk about their daily lives. Evidence sharing can lead to research to find solutions, especially results, ”said Patrice Abella.

Because the main goal is not so much to find a cure, non-existent to this day, which adds sensitivity to patients. 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, ”he explained.

July 25 Objective Champs-Elyses

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 hurt myself by not being able to stop. But the most complicated thing for Patrice Abella is being away from her family for weeks and especially from her two daughters, among whom One is currently hospitalized.

Despite the difficulties, he emphasized the “humanly strong” aspect of his approach: “There have been great encounters on the tour, with patients as well as people who don’t know pathology or 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 am optimistic and I do not want anyone to be isolated on this issue. As a parent, I want to be able to tell myself that I have done everything necessary for my children. A

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