Updated: Apr 3, 2019
The results of a study on seizure triggers in people with epilepsy and intellectual (learning) disability (ID), including people with Fragile X, has recently been published.
The study was undertaken by Jo Illingworth from the University of Cambridge as part of her PhD, and many of you took part in the study by completing a questionnaire on the situations you think are associated with increased or decreased chance of seizures.
Carers who support people with ID and epilepsy were invited to take part. Three groups of carers were asked to complete the questionnaires - those who supported someone with Fragile X, those who supported someone with Rett Syndrome (another genetic condition) and those who supported someone whose ID had some other cause. In total, 100 questionnaires were received, including 25 from carers of people with Fragile X and epilepsy.
Almost all (98%) of all the carers who took part reported at least one situation in which they thought seizures were more likely to occur. The researchers found that among carers of people with Fragile X and epilepsy, the most commonly reported situation of increased seizure occurrence was illness, which was named by over half of carers. The table below shows the most commonly reported situations and the percentage of carers who said they were associated with increased seizures.
Situations associated with increased likelihood of seizures, as reported by carers of people with Fragile X and epilepsy
Situation % of carers
2=During the evening 44
2=During the night 44
3.During the morning 40
4=At home 36
4=Doing nothing 36
4=During sleep 36
4=Waking up 36
As well as situations of increased seizure likelihood, the researchers were also interested in the situations in which carers thought seizures were less likely to occur. Fewer of these were reported, and no situation stood out as being commonly mentioned by the carers who took part.
The researchers found that the kind of situations that carers reported on the questionnaire were quite similar between the three groups they studied. This suggests that when seizures occur in people with Fragile X and epilepsy might be quite similar to when they occur in other people with epilepsy and ID.#
However, the researchers point out that the sample size of the study is small, so further work will be needed to confirm these findings.
Jo and the other researchers would like to say a big ‘thank you’ to everyone who took part in the study. The research would not have been possible without your input.