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Unfortunately, there are still many cases where epilepsy is undiagnosed. Most recently, earlier this month there was a high profile case where 29-year-old actor, Amii Lowndes, who has appeared in Doctor Who and Skins, died from undiagnosed epilepsy. Amii’s death was caused by sudden unexpected death in epilepsy (SUDEP).  Back in 2019, actor Cameron Boyce…

Category: Living with Epilepsy

Epilepsy is very varied and affects many people in different ways. There is still much that is unknown about epilepsy and more research is needed before we can fully understand it. One of the many differences that can illustrate this is a collection of childhood epilepsy syndromes.  There are new epilepsy syndromes included and classified…

Category: Syndromes

Sturge-Weber Syndrome (SWS) is an extremely rare epilepsy syndrome that the most recent figures indicate only occurs in around 1 in 20,000 births, but could be as few as 1 in 50,000.  With this syndrome, there is often a birthmark on one side of the face that’s often the first sign of SWS. This can…

Category: Syndromes

Unverricht-Lundborg Disease (ULD) is a very rare epilepsy syndrome that research indicates only affects between 1 to 4 children in every 100,000. Most children with ULD will develop tit between the ages of 6 and 16.  ULD is part of a group of epilepsy syndromes known as ‘progressive myoclonic epilepsies’ and is due to an…

Category: Syndromes

A rare syndrome that can begin at any age between 18 months and 17 years, self-limiting late-onset occipital epilepsy usually begins in middle childhood, between the ages of 7 and 10.  In approximately a third of cases, there will be some family history of the syndrome and some children will have had seizures associated with…

Category: Syndromes

There is very little known about self-limiting and pharmacoresponsive focal epilepsy, which means that it is currently unknown how common it is, only that out of every 100 children whose epilepsy starts below the ages of 2 years, between 5 and 10 will have this particular syndrome. What is known is that it appears to…

Category: Syndromes