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Life with epilepsy: Janet & Emma’s story

Janet & Emma

IMPORTANT: Do not stop taking prescribed medication without consulting your doctor or epilepsy nurse. You may also want to contact the helpline of Epilepsy Action (0808 800 5050).

Janet Williams MBE and Emma Murphy live with epilepsy and both have children affected by exposure to the anti-seizure medication sodium valproate during pregnancy. Together they co-founded In-FACT – the Independent Foetal Anti-Convulsant Trust – in November 2012 and have campaigned tirelessly for better patient information and compensation for the families affected.

To coincide with the publication of The Hughes Report into redress options for families affected by valproate, we sat down with Janet and Emma to discuss the impact of epilepsy and valproate on their families and what the report means for their campaign. 

Emma: I was diagnosed with epilepsy aged 12 after having a series of tonic-clonic seizures. I was quickly prescribed sodium valproate, which was very effective. At the time I became pregnant there were no warnings on sodium valproate during the consultation or on the packaging. My husband and I questioned if it was safe to continue using valproate but the response was always that it was the best medication to treat seizures.

When the children were very young, I noticed that they weren’t reaching certain milestones, and I just knew something wasn’t quite right. I questioned it with doctors but was dismissed and told it was the ‘terrible twos’, or I had depression, or it was all in my head. Then one day my sister rang to say there’s a lady on the news talking about valproate – it was Janet, appealing for women to come forward. I instinctively knew at that moment that my children had been affected.

I contacted Janet, who told me about foetal valproate syndrome and from then it was a case of getting the children diagnosed. After that, further diagnoses followed including: cerebral palsy, deafness, incontinence, epilepsy, sensory processing disorder. The older they’re getting more things are cropping up. It’s devastating.

Janet: My first son was born in 1989. Throughout the pregnancy, there was never any mention about the risks of valproate – there wasn’t even any patient information leaflets. When Lee was first born, he suffered with withdrawal. He was referred to a paediatrician, but valproate still didn’t come up. 16 months later Phillip was born, and we went through the same process again. This time the paediatrician referred both boys to a geneticist who identified valproate as the cause of their problems. Their health has really suffered because of it. Phillip had several serious operations before the age of five, before he was even at school, suffering fine and gross motor problems, speech and language, hearing and vision problems, the list goes on. Lee was diagnosed with Asperger’s syndrome and attention deficit disorder and, like Philip, had numerous childhood surgeries. He was diagnosed with scoliosis at 15. You get over one problem and another one arises – that always seems to be the pattern.

My sons have both been through college and university with the support they’ve needed, but now they’ve finished their education it is their life skills that really do let them down. To understand things like employment and how the world works has been a struggle for them. They are both still at home – Lee wants his independence, but he needs additional support to be able to do that. Phillip however is totally different and isn’t able to live by himself without 24/7 care. It’s frightening for us as parents to think what’s going to happen to them when we’re no longer here.

Emma: As parents, we fight for support for our children. Everything is a fight, and when we’re no longer here who is going to fight for them, who is going to support them?

How did you become involved in campaigning around the prescribing of valproate?

Janet: In 2010 the product liability litigation case around the pharmaceutical company who manufactured the sodium valproate collapsed. Emma and I met up soon after and we desperately wanted answers. How did this happen? Why were women not informed about the risks with sodium valproate? It was then that we decided to start the Independent Foetal Anti-Convulsant Trust (In-FACT) – our national valproate campaign.

Emma: There were two aims of the campaign when we first started. The first was to get warnings printed on boxes and patient information leaflets so that when they were dispensed women were given an informed choice. Our second goal was compensation for all the children and families affected. The recent report by Dr Henrietta Hughes outlining redress options for those affected by sodium valproate, was a huge milestone.

Janet: We were really pleased when the warnings were agreed. It took us five years to get better warning labels on patient leaflets and sodium valproate packaging. To get to this point, where redress options are being considered has taken us another five years. It’s a tremendous turning point and this report has cemented the campaign – that’s how important it is. Dr Henrietta Hughes has spoken with families, as well as researchers, like Dr Rebecca Bromley, who have driven forward the work in this area and is supporting the call for compensation by families. It’s a huge turning point.

Emma: Central to our campaign efforts has always been patient stories. Some of them are heartbreaking, but people do need to hear them. When people talk of their children, they’re so passionate and you can’t help but be moved by them. It’s those impactful stories that really do make a difference.

What are your hopes for future research into epilepsy and the role the Institute can play?

Janet: I think it’s important that more in-depth research into foetal valproate syndrome takes place, so that we can better understand the condition and its impact and help the children and families affected. I think it’s also important that more research is carried out looking at alternative anti-epileptic medications that don’t cause harm to unborn babies. There could be many women living with epilepsy who want to have children but because of what has happened with valproate they may be too frightened of the risk. To know that there is a medication that doesn’t harm unborn babies at all, is vitally important too.

Emma: Research into anti-seizure medicines and pregnancy has been overlooked and underfunded for far too long, which has been a big factor that has let the campaign down. There urgently needs to be more funding allocated. That’s why we’re so pleased to see Reproduction & Hormones is a key research theme of the Epilepsy Research Institute, with a dedicated taskforce group led by Dr Rebecca Bromley and colleagues, to drive strategic investment into this research area. This will drive the change so urgently needed for women with epilepsy and their families.

To find out more about Janet and Emma’s remarkable campaigning and the changes in policy they have helped bring about, visit the In-FACT website.

You can help support research into the causes, treatment, and prevention of epilepsy and associated conditions by making a donation to the Epilepsy Research Institute today.