Story

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. 

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”. 

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.