Quelle est l'espérance de vie avec le Syndrome De Joubert? Est-ce que vous connaissez les derniers progrès du Syndrome De Joubert?

Espérance de vie avec Syndrome De Joubert : ce que disent la recherche et les patients, avancées récentes et synthèse vérifiée avec sources.

Original


There is no reason to believe those diagnosed with Joubert syndrome can't live a full normal life. I have personally heard of a confirmed case of a 67 year old in Portugal recently diagnosed with Joubert syndrome. Understanding of the syndrome and proper diagnosis is fairly new so finding those cases of older individuals with the syndrome is a hard thing to do. That should not be taken to mean that those with JS have a shortened life expectancy, only that those who are older are mostly mis- or undiagnosed.

Traduit