Organisation for Anti-Convulsant Syndrome
Registered Charity No. 1116497
UK Helpline: 07904 200364
Jo Cozens: Chairperson
My Name is Jo Cozens; I am the chairperson of OACS, I was first diagnosed with Juvenile Myoclonic Epilepsy & Photosensitive Epilepsy when I was 17, following a seizure caused by strobe lights at a disco; I was put on Sodium Valproate and told that I would need to use it all my life.
I was married in 1997, it was not long before my husband and I talked about starting a family. I was aware that there may be problems with taking Sodium Valproate, if I planned to become pregnant instinctively. I made an appointment with my local GP at the time, he said that he was not sure of all the implications regarding Sodium Valproate and referred me back to the Neurologist.
I then saw my local Neurologist he advised me to take a day dose of Slow release Sodium Valproate 3 times a day plus a higher dose of Folate Acid. He advised me at the time that there was a 1% increased risk of having a baby with Spina Bifida, this to my husband and I was a low risk to take we were both very pleased.
December 1999 Tomas was born by Caesarean section 3 weeks late! Leaving the hospital was an ordeal I didn’t feel 100%, I had just had a caesarean and Tomas had developed sniffles, great I thought at the time poor thing has got his first cold; little did I know both Tomas and I had picked up a super bug MRSA, leaving Wales’s leading hospital! 4 months later Tomas and I shock off the awful bug. It was hard to trust the medical profession after that, but my trust in doctors was just about to take a further dip.
As parents of Children affected by Anti-Epileptic medications, we go about daily living, as if it is all normal but 5 operations in total later and over 70 GP & Hospital visits tell a total different story. I consider myself as one of the lucky parents, Tomas is one of healthier children affected but as a 15 year old teenager, he’s now social prisoner in his own world, never going out, never socialising with other Children face to face.
In February 2013 I found out that Sodium Valproate might be the cause of all of Tom’s Medical issues as my Dad read about this link in a Newspaper article. In 2013 Tomas was diagnosed with fetal Fetal Valproate Neurodevelopmental Effects.
It was after this that I found OACS, which is where my journey began when I learnt just how many children had been affected in the UK I knew I had to get justice for 40,000 Children, born to mothers that took the Epilepsy drug Sodium Valproate, in their pregnancy. I was shocked when I found that other anti-epileptic drugs also had adverse effects too; but the risks are not as high as sodium valproate). Given what is now known about sodium valproate, I want to ensure that the Government, Contact everyone who’s had a baby whilst taking Sodium Valproate. We need to ensure that all these families are getting the correct medical, educational, financial & social care that they need for the lifetime of their Children. It is important that they understand, what has cause the problems that their beautiful Children have. for me it was the final piece to the jigsaw puzzle. Tomas has been formally diagnosed with Fetal Valproate Neurodevelopmental Effects & Asperger’s, fine motor skill, Low IQ, Severe Pragmatic Language Disorder, Flat feet, Soft Dysmorphic Features, Poor Balance and hearing loss, these are just a few of the things, that we now live with on a day to day basis.
We need to be passing on our stories, to educate people so that lessons can be learnt. Somewhere out there, sleeper people like me, are going about their lives, not knowing about the Epilepsy drug that they took just like you and I, affected their child.
I want to personally ensure that the in my lifetime that Government legislate so that this never happens again. As it is there are so many gaps in Drugs regulation across Europe that cases like Valproate & Thalidomide will just continue to happen unless as individuals we all start to ask questions. To know and understand all of this, it is our duty as citizens of the world ,to pass this message on and tell as many people about the effects of Sodium Valproate and other Epilepsy drugs have had on our Children as we can. Together we can find the missing Children that have yet to achieve a diagnosis.