Epilepsy Survey for Women

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  • New survey launched to find out how aware women and girls are of the risks around sodium valproate
  • ​Data will be presented to public hearing into the medication in September
  • Last survey showed 20 per cent  of women taking sodium valproate were not aware of the risks
  • Take part in our survey and help provide vital information for public hearing

Are you a woman or girl under the age of 50 with epilepsy? We are trying to find out how aware women are of the potential risks around the epilepsy drug sodium valproate, if taken during pregnancy.

Take part in the Epilepsy Society survey, click this link > our survey < now, and help provide vital information for the public hearing into sodium valproate in September!

In conjunction with Epilepsy Action and Young Epilepsy, we are launching a survey  to find out whether women and girls of childbearing age are receiving the right information about sodium valproate.

Data from the survey will be presented to a public hearing into sodium valproate being held in London by the European Medicines Agency on 26 September.

What are the risks?

Up to 10 per cent of babies exposed to sodium valproate in the womb are born with birth defects and up to 40 per cent have a risk of neurodevelopmental disorders.

However for some women, sodium valproate will be the only drug that will control their seizures and it is important that women are given the right information about risks so that they can make an informed choice about their treatment in conjunction with their doctor.

Women should never stop taking their medication but should always seek the advice of their doctor over any concerns.

MHRA toolkit

In February last year, the MHRA (Medicines and Healthcare Products Regulatory Agency) launched a toolkit to increase awareness of the risks. The toolkit includes a credit-sized patient card to be issued by pharmacists and a booklet with key questions and discussion points for women and healthcare professionals.

In April 2016 we launched a first survey that showed that almost half of women with epilepsy were unaware of the risks around sodium valproate, and 20 per cent of those who were taking the medication were not aware of the risks during pregnancy.

Now, almost 18 months later, we want to find out whether more women are being given relevant information and whether they are having an informed discussion about sodium valproate with their healthcare professional.

Please take a moment to fill in the survey and also share it with family and friends so we can reach as many women with epilepsy as possible.

Thank you.

Find out more

Read the guidelines around sodium valproate.

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