Living with a rare disease

Documentary photographer Díana Júlíusdóttir captures moments in the life of a family living with a rare disease, Alternating Hemiplegia of Childhood.

Diana captured these images during the years 2017-2019. 

Sunna Valdís Sigurðardóttir is the only one diagnosed with AHC in Iceland but the odds of having a mutation in the gene ATP1A3 that causes the disorder is one in a million

The photos capture the suffering and anxiety of Sunna´s caretakers. 

The disease is episodic and the episodes can strike like a lightning without any premonition. These episodes can be extremely painful when all the muscles of the body cramp at the same time

Living with AHC is like living with a human time bomb 

Written by: Sigurður Hólmar Jóhannesson (father to Sunna Valdís)