Patrice Abela has set himself a crazy challenge: this father of four children has decided to run the Tour de France, a “running” course of 3328 kilometers. The Haut-Garonnais left Copenhagen on April 12, 2022; on July 5, 2022, he started his 17th stage from Saint-Gaudens. His goal: complete this incredible marathon in 90 days…
Beyond the sporting achievement, Patrice Abela hopes to raise public awareness of the disease suffered by his two youngest daughters, Coraline and Alizée: congenital insensitivity to pain (ICD).
Congenital insensitivity to pain (CDI) is a rare pathology, first described in 1932, which belongs to the family of hereditary sensory and autonomic neuropathies.
A rare disease and probably of genetic origin
In its most severe form, CDI is characterized by an absence or a radical decrease in pain sensation: thus, patients with CDI do not feel (or very little) pain, they often injure themselves, and undergo frequent trauma – burns, fractures, internal injuries, cuts… In addition, patients often have mental retardation.
Probably caused by genetic abnormalities, congenital insensitivity to pain (CDI) would be linked in particular to an attack on certain sensory fibers making up the peripheral nerves. To date, the treatment of CDI is only symptomatic: it consists in particular in preventing self-harm.
“By alerting communities, schools, hospitals, we can make the pathology known and thus avoid judgmentssays Patrice Abela to our colleagues from The Dispatch. Some families have been incriminated by the medical profession, which observed frequent injuries to the bodies of their children.“
Source :Neurological reviewFebruary 2009
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