Epilepsy Society launches ‘Safe Mum, Safe Baby’ campaign
Epilepsy Society is launching a new campaign - ‘Safe Mum, Safe Baby’ - calling for safer epilepsy medications in pregnancy. We need to hear from women about the challenges they face when planning a family and ensuring they have good seizure control and that their baby will not be harmed. Find out how you can lend your voice to our campaign.
A new review has shown that some of the most commonly prescribed epilepsy medications can pose an increased risk for babies during pregnancy.
While lamotrigine and levetiracetam have been shown to be the safest medications during pregnancy, data has highlighted an increased risk with many other medications.
It is well known that valproate carries a high risk of harm to any baby exposed to it during pregnancy, but a report from the Commission on Human Medicines has also shown that there are risks linked to other drugs including carbamazepine, topiramate, phenytoin and phenobarbital.
You can read the full review here
Please note, you should never stop taking your medication without consulting your doctor.
What we are asking for
The Epilepsy Society is launching a new campaign – Safe Mum, Safe Baby - to ensure that all women and girls of childbearing age are aware of the risks and are called in for an annual review to discuss their treatment options with their neurologist or GP.
We are also calling on the government to increase funding into research around why some epilepsy medications can cause physical and neurodevelopmental disabilities in babies exposed to them during pregnancy.
We believe this knowledge could lead to the development of safe medications.
The Medicines and Healthcare products Regulatory Agency (MHRA) has been working with NHS Digital to develop a registry to monitor both the use of valproate and any children exposed to the drug during pregnancy.
We are asking the MHRA, as a matter of urgency, to extend the registry to include individual data relating to all anti-epileptic drugs, so that researchers can begin to understand why some pregnancies are more vulnerable than others.
But we also need your help.
Share your story
If you would like to join us in our Safe Mum, Safe Baby campaign by talking about your own experience and the challenges faced by women in ensuring that their seizures are controlled during pregnancy and their baby is safe, we would love to hear from you.
Please email us at email@example.com and tell a little about your epilepsy, the concerns you may have around your medication and planning a family and why you are supporting our campaign. Please include a number that we can contact you on.
We would also like to hear from anyone who feels their family has been affected by epilepsy medication during pregnancy.
Research is key
Nicola Swanborough, Head of External Affairs said: “Our goal is to ensure that in the future no woman should have to worry that the medication she must take to control her seizures might affect the health and development of her baby.
“Research is key to understanding why these medications increase the risk of harm during pregnancy. The only thing that stands between research and knowledge is funding. We hope that the government will respond to our campaign and help to ensure the health and happiness of future generations of children and their families.”
(Please note that the photographs used in the above campaign imagery are iStock images)
Yasmin Golding is 26 and relies on a combination of three epilepsy medications to help control her seizures. But she worries about the health risk that the drugs could pose to any baby during pregnancy, should she decide to start a family.
Following publication of a review highlighting the risks linked to some epilepsy medications during pregnancy, our Medical Director, Professor Ley Sander, has written a letter to support women and girls requesting a review of their medication and an urgent referral to a neurologist if they are planning to become pregnant.
The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.
Martha Cronin was diagnosed with epilepsy during lockdown. She was prescribed carbamazepine over the phone by her neurologist with no warning about the risk linked to the drug for any baby during pregnancy. Martha describes how overwhelming it was to learn from her GP about the potential harm her medication could pose if she decided to start a family.
Chantel Reeves was taking the epilepsy medication, carbamazepine when she discovered she was pregnant. Here she relives her anxieties about how it might harm her baby and why she is backing our Safe Mum, Safe Baby campaign.