UKIST is grateful to Kamala Murugesu, one of our fabulous group admin team, for representing us at the epilepsy research conference On Tuesday 17 May I attended the Shape Network’s first in-person conference on Epilepsy Research at the Francis Crick Institute, London on behalf of UKIST. It was a great half day conference filled with […]
News
Pioneering Study Discovers an Underlying Cause for Infantile Spasms and Points to a Novel Therapy
UKIST were really excited to hear news this week from an American study, funded by the charity CURE epilepsy, of a potential new treatment for infantile spasms, currently at the stage of success in animal models. The currently available treatments work for about 75% of patients initially (though some later relapse) but have significant side […]
Our May warrior – Violet
When we found out we were pregnant with our second child we were delighted! We had always wanted a sibling for our 3-year-old son Ronnie. The pregnancy progressed as normal, with no causes for concern, until we attended a routine scan at 36 weeks. The sonographer noticed something unexpected on our daughter’s brain. The ultrasound […]
Fantastic news – NICE publish new guidelines for epilepsy
Today NICE have published their new guidelines for assessment and treatment of epilepsy. The old guideline did not make any specific provision for infantile spasms, lumping all first seizures together and recommending an assessment within 2 weeks. UKIST are honoured to have been a stakeholder in developing and reviewing the new guidelines, which recognize ( […]
UKIST annual meeting report
SATURDAY 26 & SUNDAY 27 MARCH 2022, VIA ZOOM Attendees: Alice Goldhill, Amy Dowding, Jenny Rawling, Louisa Freer, Michelle Scoffield, and Samia Sanders. Apologies: Belen Robbins. UKIST AMBITIONS Trustees unanimously agreed to maintain the current charity ambitions, with no amendments: Educate – to improve awareness of the symptoms of infantile spasms amongst the medical […]
All the P’s – Participating in parent priority projects and priority setting partnerships – parents informing research
Our Trustee Jenny Rawling writes Wearing my trustee and parent ‘hats’ I’ve had the privilege of taking part in two workshops this week that aim to hear the voices of all those affected by epilepsy in order to inform research priorities. The first was hosted by the James Lind Alliance and British Paediatric Neurology Association […]
Our April warrior – Oliver – infantile spasms as a result of HIE
Our warrior this month is Oliver who was diagnosed with a birth injury called HIE – hypoxaemic ischaemic encephalopathy (lack of oxygen – restricted blood flow – affecting the brain). HIE is one of the major underlying causes of Infantile spasms. Half of children who have HIE which involves neonatal seizures, damage to certain areas […]
Information for anyone with epilepsy affected by the war in Ukraine
The crisis in Ukraine means that many people with epilepsy may have difficulty accessing medications and treatment, whether they have fled the country or remain, and this could have dire consequences for those with the most complex needs. Language barriers, individual country policies on medications available and trying to cross borders with multiple medications are […]
Our March warrior Chloe – beating the odds.
Chloe was born unexpectedly at 28 weeks 5 days weighing a little over 3lb and spent the first 170 days of her life in hospital. She battled sepsis and meningitis in her first week and then the doctors discovered a bronchogenic cyst compressing her airway. At just under 3 weeks old she had her first […]
February warrior Tia – success with the ketogenic diet
When Tia was around 4 months old she started doing some unusual movements, we took her to hospital numerous times however we kept being told it was colic and reflux. Tia was eventually diagnosed with infantile spasms in January 2020, when she spent two weeks in hospital as she regressed with her development and was […]
