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Why mums with epilepsy get my #votesforwomen

Created:

6 February 2018

Epilepsy Society's chief executive Clare Pelham explains why mothers who have campaigned relentlessly about equality in women's health, are her inspiration as we celebrate #VotesforWomen

On the centenary of the day parliament granted women the right to vote, we celebrate one amazing group of women who embody the struggle for equality in women's health and the fight for them and their children not to go unheard and unseen.

Janet Williams, Emma Murphy, Emma Friedman, Deborah Mann, Karen Buck and Susan Cole have one thing in common. They have all been affected by sodium valproate, the epilepsy drug they were prescribed during pregnancy and which has gone on to have heartbreaking consequences for their families.

Although the drug is recognised as an effective treatment in controlling seizures for women with epilepsy, it can also have devastating consequences  for a developing baby during pregnancy. Ten per cent of babies exposed to sodium valproate during pregnancy are born with physical disabilities and up to 40 per cent go on to develop learning difficulties.

These are startling statistics but for the valproate women and thousands of others like them in the UK alone, the statistics are the wallpaper of their lives.

Not only do they have to deal with their own epilepsy, but they also have to cope on a daily basis with the challenges faced by their children, many of whom will never go on to live independent lives. Some of them know their children's lives could be short. Deborah Mann's daughter, Branwen, has been told she could die at any time.

Avoidable disabilities

Sodium valproate was first licensed in the UK in 1974 but it was only last year, in 2017, the world finally started to take notice of what they have been saying for decades: women and girls of childbearing age are not being told about the risks associated with the drug during pregnancy. They are not being given the information to make informed choices about starting a family. Babies are being born with avoidable disabilities.

These women have campaigned tirelessly in parliament, in the press and at the European Medicines Agency (EMA). No-one can wave a magic wand and turn the clock back or undo the harm caused to their children by sodium valproate. But they can prevent other women and families suffering similar consequences in the future. Their voices can ensure that more babies are not born with avoidable disabilities because their mothers were not told the risks associated with the drug.

In 2016 the Medicines Healthcare products Agency launched a valproate toolkit to disseminate information widely to women and healthcare professionals. But as 2017 drew to a close, a survey conducted by Epilepsy Society in conjunction with Epilepsy Action and Young Epilepsy, showed that 20 per cent of women taking sodium valproate were not aware of the risks, and 70 per cent had not received the toolkit.

Mandatory conversations

As we mark #VotesforWomen today, we are awaiting the recommendations of the UK's Expert Working Group on Sodium Valproate, as well as the outcomes of a public hearing held by the EMA as part of a safety review of valproate. The women, like the charities, are calling for mandatory conversations with their doctors about the risks, at least annually, for all women prescribed sodium valproate.

When the suffragettes were storming parliament, there were banners and anthems, chants and sashes.  Today's campaign banner is the hashtag, in this case #valproateawareness

In 2014, Janet Williams nominated her two sons, Lee and Philip who have fetal valproate syndrome, as her inspiration in an 'inspirations special' edition of our magazine, Epilepsy Review.

Janet said: 'They keep me going and deserve everything life can give them.'

Today Janet and all the valproate women are our inspiration.