UK Infantile Spasms Trust
Infantile Spasms is a rare form of epilepsy that can have devastating effects on brain development. It is often referred to as 'little seizures, big consequences'. Unless it is recognised and treated early the prognosis for affected children is very poor, but because it is rare it is often misdiagnosed as reflux or startle reflex.
The charity was set up by a group of UK parents who found each other through one of the international IS support groups. Prior to 2016 there was no Infantile Spasms support network in the UK. We started as a Facebook group, and found like-minded parents who were passionate about raising awareness of IS and supporting other families. UKIST became a registered charity in March 2017.
Charity No: 1172167
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