The UK Infantile Spasms Trust (UKIST)
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, which can be very difficult to recognise – but potentially very damaging if left untreated.
INFORMATION & GUIDANCE
Infantile spasms occurs in very young children, usually under the age of one, and causes babies to have seizures that can look very similar to colic and reflux. However, a baby with infantile spasms is in fact experiencing a chaotic brainwave pattern that can lead to loss of skills and brain damage, so early diagnosis and treatment is key.
SUPPORT OUR CHARITY
There are so many ways to support UKIST and help us fight for a better future for children with infantile spasms.
You can help us by simply sharing our video below, to raise awareness. Alternatively, you may wish to make a donation to support our work, or raise money by hosting your own fundraising event or taking part in an organised event.
MORE ABOUT UKIST
UKIST was set up in 2017 by a group of mums who originally found each other via social media when they were looking for advice about infantile spasms.
The charity is dedicated to raising awareness of infantile spasms, providing much-needed support to families and funding vital research – because the more we know, the more we can do.
INFANTILE SPASMS AWARENESS VIDEO
This video was made by UKIST to demonstrate how subtle infantile spasms can be.
We would be grateful if visitors to the site would share this video to raise awareness. Early recognition, diagnosis and treatment of infantile spasms are critical to improving outcomes.
Bryn Bear's Guide to Infantile Spasms
Thanks to a grant from the child neurology foundation UKIST has been able to take forward a project to write a book for children about infantile spasms - this is designed to explain IS to siblings or friends of affected children, or to help affected children understand their own story as they get older.