Question 22484 — diseases

Summary

Mr. Jean-Paul Lecoq questions the Minister of Solidarity and Health about the treatment of the pathology of osteogenesis imperfecta (more commonly called brittle bone disease). This so-called orphan pathology causes significant fractures and bruises, as well as hearing loss from the age of 20. In addition, before this disease is diagnosed, the parents of children affected by this pathology are frequently confronted with suspicion of abuse, especially when combined with hyperactivity. In cases where the diagnosis is made, it is regrettable that no specialist works in the Seine-Maritime department. Due to the absence of a practitioner capable of determining the level of disability caused by this disease, it is often underestimated. Thus, the disability of these children is recognized at 79 % by the House for Disabled People, which leads to a whole series of complications in their daily lives, such as the absence of a school assistant and the lack of financial support to go for a consultation with a Canadian specialist. In view of these elements, he questions him on the provisions envisaged to allow better access to care and support for patients suffering from osteogenesis. imperfect.

Machine translation from French. The official text remains authoritative.

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