The Life and Death of Aleksandr Batutenko

This article is dedicated to the memory of Aleksandr Batutenko, a person who was not afraid to declare publicly his rare disease. It was written by Aleksandr Batutenko's wife Nadezhda, and it is published here with her permission.

Aleksandr was a brave young man who lost his life trying to clarify his diagnosis for the benefit of other periodic paralysis patients in the Ukraine. 

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Irm's Story

The PPI's Client Services Representative in The Netherlands is Irm. Irm and her son were clinically diagnosed with HypoKPP-plus in Germany in September 2011, but she has had symptoms since she was a young child. At the age of 7, she told her parents, “My head is awake but my body still sleeps”. 

But you look so normal!

Stories We Tell are e-mail exchanges written by our List members. In this exchange patients discuss the difficulties of see-sawing between between looking fine and lying in a heap somewhere, not always in the place of our own choosing.

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