The fight of a family against PKAN

10 February 2018 | News

When both parents have a gen deviation, a child born has 25% chance to have PKAN. All three of the children of family Kulsrud have PKAN. Read their poignant story:
https://globalgenes.org/raredaily/a-familys-fight-against-pkan/

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Over Stichting Kans voor PKAN Kinderen

Op dit moment overleeft geen enkel kind de ziekte PKAN. Ze worden niet ouder dan 15 jaar. Waar eerder geen behandeling mogelijk leek, is onderzoek nu in volle gang en komt een oplossing steeds dichterbij. Samen gaan wij dat mogelijk maken. Help je mee?

About PKAN

PKAN (Pantothenate Kinase-Associated Neurodegeneration) is a hereditary disorder that is categorized in the group of distinct rare disorders featured by an accumulation of iron in the brain of young children. Many individuals with the classic form of PKAN lose the ability to move or walk independently between 10 and 15 years after the initial indication of symptoms and will therefore require a wheelchair by their mid-teens. They often lose the ability to walk, to talk, to swallow and their vision. All this while they are often in a full state of awareness as the mental ability of children suffering from PKAN is not always affected. It is progressive and will ultimately result in the patient’s death at a young age.