Too many women unaware of the risks linked to epilepsy medication in pregnancy
Not enough women and girls are being informed of the risks associated with taken certain anti-seizure medication during pregnancy, a new report has shown.
It is vital that anyone taking epilepsy medication does not suddenly stop taking it, as doing so could cause breakthrough seizures which could be harmful. We encourage anyone with any concerns to talk to their doctor.
In November 2022, Young Epilepsy, Epilepsy Action and Epilepsy Society, carried out a survey of women and girls with epilepsy, and their parents and carers, to ask them about the information they have received around the risks of taking certain anti-seizure medication during pregnancy and how well they feel this information is being communicated to them.
The results showed that a third (33%) of women and girls taking anti-seizure medications such as topiramate, carbamazepine, phenobarbital, phenytoin or pregabalin, were not aware these drugs increased the risk of physical birth abnormalities if taken during pregnancy.
Furthermore, 53% of the women surveyed under the age of 24 were unaware of the potential risks related to these medications.
Awareness of the risks linked to valproate seems to have improved, with data showing that only 9% of respondents were unaware of the risks of taking valproate during pregnancy, compared with 18% in a previous 2017 survey, and 17% in 2019.
However, it remains vital that communication continues to be improved when it comes to this drug, as research shows that up to 40% of babies exposed to valproate in the womb are born with physical or neurodevelopmental disabilities.
Over a third (36%) of respondents feel the information they were given around the risks of epilepsy medicines and pregnancy wasn’t adequate.
Concerningly, almost a third (31%) stated they have never spoken with a healthcare professional about the risks of taking epilepsy medications while pregnant.
When it comes to supporting young women with epilepsy, it is clear that more needs to be done to improve communication around epilepsy medicines and pregnancy. According to the report, almost two fifths (39%) of respondents 24 and under felt unsatisfied with the information they were given about the risks associated with taking certain anti-seizure medications while pregnant.
Commenting on the results, Rosemarie Pardington, Director of Health at Young Epilepsy, said: “Young women with epilepsy, and their families, shouldn’t be left out of conversations on how medication can affect pregnancy. They need clearer information earlier on so they can make informed decisions about their epilepsy treatment and how this might affect future life plans. We also need to recognise they are being asked to make these difficult decisions at the same time as balancing the risks of effectively managing the impact of epilepsy and seizures on their own health and wellbeing.”
Over 1,200 women and girls across the UK responded to the Epilepsy Medication in Pregnancy survey, which was conducted by the UK’s leading epilepsy charities, Epilepsy Action, Epilepsy Society and Young Epilepsy. Over 300 responses were received from young women and girls under 24 and their parents.
It is vital that anyone taking anti-seizure medication does not suddenly stop taking it, as doing so could cause breakthrough seizures which could be harmful. We encourage anyone with any concerns to talk to their doctor about treatment options.
The Medicines and Healthcare products Regulatory Agency (MHRA) has a leaflet all about epilepsy medicines and pregnancy. The MHRA reviewed the risks associated with different epilepsy medicines and found that some are safer to use during pregnancy than others. You can take a look here.
