UK Infantile Spasms Trust

UK Infantile Spasms Trust

At a glance

Causes

  • Children / families
  • Counselling / advice
  • Health and well being / research and care

Other details

Geographical remit: 
National - Britain

Objectives

The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder Infantile Spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little-known condition. 

Infantile Spasms is a rare type of Epilepsy that occurs in young children, usually under one year of age. About 400 children a year are diagnosed in the UK. This is a serious seizure disorder because a child with Infantile Spasms has a chaotic brainwave pattern that may cause loss of skills and brain damage. Infantile Spasms can be very difficult to recognise and is often misdiagnosed as colic and reflux, or startle reflex. Unless it’s recognised and treated early the prognosis for affected children is very poor.

Activities

Prior to 2016 there was no Infantile Spasms support network in the UK. A passionate group of like-minded parents with children affected by Infantile Spasms established UKIST, and the charity was registered in March 2017.

The charity has three clear aims. First, we’re focussed on improving awareness of the symptoms of Infantile Spasms amongst the medical profession and the public - because early diagnosis is key. Second, we provide a vital network of support to parents and carers with children affected by Infantile Spasms. And third, there more we know, the more we can do, so we’re also supporting the advancement of clinical research into Infantile Spasms.

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