Fatal insomnia

We discuss a case of fatal familial insomnia today, which presented with slight ataxia and subjective “shakiness”, then got transferred to the Psych department b/c of depression, delirium and insomnia, finally turned out to have inherited the disease from his father who died “at 55 from Alzheimer’s”; both his siblings were depressive and one was said to be an alcoholic, suffering from bouts of shakiness.

As references I can recommend

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The Huntington case of the AAN ethics curriculum

As you might know, the professionalism movement has hardly reached the german medical world, let alone hospitals. Personally I find a lot of the material developed in this field quite helpful. Tomorrow, we will work through the “Huntington case” of the American Academy of Neurology’s ethics curriculum. As far as I know the information in the text is still up to date, i.e., conforms to the recommendations of the International Huntington Association & the World Federation of Neurology. At least that’s what our german guidelines say.
Since our Assistenten won’t bother reading material in advance (I do not even know the number of participants beforehand), we will work through the case online and just do the discussion part. This should lead to the realization that you need some structure for such ethical discussions – and I will hand out the particular example of the text to them.

As for literature on Huntingtons, there is nothing better than a current review in the Lancet Neurology. With regards to the ethical problem of presymptomatic genetic testing in Huntington’s: You will find a chapter on this classical topic in any good genetics book and similarly in every good ethics book.