An email landed in my inbox late last week, announcing a briefing from the MHRA concerning the regulatory measures for the safe use of valproate. I sat up sharply and paid attention, the valproate advocacy work had been slightly quiet of late (or I’d been a bit side-tracked by studies!) but this was the first contact I had for a while.   WHAT DID WE LEARN I tuned in Monday Morning, waiting with bated breath, there was a lot to take in but the key take aways are: After an initial decline in the prescribing of Valproate, it now appears to have tapered off, meaning the guidelines have not b ..read more

#SpeakUpToSaveLives  I love this theme for this year's SUDEP Action Day. I have been thinking about it for a few weeks whilst thinking about putting pen to paper, but what surprised me was it made me think up little ways in which I could speak up. It isn’t always the big things that make a difference, my own example was seeing a friends Instagram video that was a bit “flashy” , my friend was ace, put a trigger warning at the start of the video, and told me how it helped her and would maybe prompt others. That small stone casts a ripple.  2020 has been a strange year for everyone, I ..read more

​Epilepsy is a funny thing isn't it. You think you have got to grips with it, you think you have it sussed and then it finds a way to remind you you're not in control  - and that is forever the feeling I detest. 26th March 2020 (Purple Day) will mark two years for me, two years since my last tonic clonic seizure. Two years since I last lost consciousness because of a seizure. Two years since I last felt a risk to my boy, two years since I felt a burden and two years since I counted my lucky stars for the friends we can rely on. However lately my own epilepsy has been tapping me o ..read more

#5forepilepsysafety ​ This year the message for SUDEP Action Day is a simple one. Take 5. Whether that be five minutes to educate yourself about SUDEP, five minutes to share information online, five minutes to contact your MP, or 5 minutes to make the decision to fundraise, campaign or raise awareness. It’s not much to ask at all when you realise that by taking five you may just save someone’s life ..read more

Cameron Boyce, not a name that met anything to me and when news of his death broke on 20th July I was so caught up in my grief for my own Mum that I didn’t bat an eyelid. That was until the family released a statement saying “He passed away in his sleep due to a seizure which was a result of an ongoing medical condition for which he was being treated.” My inbox, texts and facebook went nuts as it always does when seizures/epilepsy hit the headlines. Then today 31st July the coroner ruled that he died of Sudden Unexpected Death in Epilepsy. My heart broke, for his family for his friends ..read more

​We so often teach children about stranger danger but how often do we ever touch on the fact that someone you don't know, someone you may never set eyes on again could end up having the biggest impact on your life, being your saviour at your worst moment. I wonder four years on if you ever think of us? I can tell you now I think of you often, as I do of my work colleague, station staff and doctors from that day. I remember you on the big days like Noahs birthday, when I'm anywhere near Bow Road and you may find it surprising but on the days when nothing in particular has happened ..read more

I have tried to write this so many times, in so many ways over the last few weeks, but what has ended up on the page has been a total jumble. In many ways it is a very clear reflection of my mind when it comes to Post Traumatic Stress Disorder (PTSD) and trying to process the events of my pregnancy with Noah. This blog is my experience, what has helped me and how PTSD has affected our lives, as ever I can only speak about how it has been for us, and as we discovered PTSD is very personal to each individual.  Four years ago today I had a seizure and fell down tube station stairs, the eve ..read more

Crazy hair when finished! I am very late to write this but it has taken me a while to be brave enough to share the photos and experience, but as I always said I’d be honest - I guessed it was time to share this too. In all honesty I was embarrassed, I was embarrassed by the photos, embarrassed by how I looked and embarrassed about having to have it done at all, I felt very vulnerable and exposed.Back in September 2018 I had a home Video Telemetry to try and get to the bottom of my seizures, as it happens by the time the test had been sorted I had been on Pregabalin for a while and some so ..read more

SUDEP (Sudden Unexpected Death in Epilepsy) is one of them things, no one wants to think about it, no one wants to believe it happens and nobody believes it will happen to someone they love, that is why this years campaign from SUDEP Action is so very important. Awareness isn't enough its time to ACT! I struggle every year with what to write, so much so its Tuesday morning and I’m still working on this. I always want to do the topic justice, I always want to make sure I get the message across clearly. There is no pretty way to write about SUDEP and this isn’t about scare monge ..read more