Classic ataxia-telangiectasia: the phenotype of long-term survivors

ConclusionsPaucity of descriptions in the literature, and withdrawal from medical care complicate the acquisition of follow-up data on the natural history of long-term survivors. Irrespective of these limitations, we have obtained impression of the many problems that these patients face when surviving beyond 30  years of age. Awareness of these problems is needed to guide follow-up, counselling, and (palliative) care; decisions about life-prolonging treatments should be well considered.
Source: Journal of Neurology - Category: Neurology Source Type: research