We fight to improve the lives
of everyone affected by epilepsy

Susan Cole

When I was diagnosed with epilepsy in the 80s it was a big deal at the time - the unknowns, the driving, the swimming, trying to find work. But really wasn't truly a big deal until I had my children.

Babies exposed to Sodium Valproate in pregnancy have now been found to have a 40% average risk of developmental problems with major congenital malformation risk of 11%. This is new information - except it isn't. There were glaring warnings found in research decades ago and this was never pursued by the regulators or the drugs companies.

Despite the Fetal Valproate Syndrome being described in 1985 it was never put on the information leaflets, never discussed with doctors and we have had to fight every step of the way. 200 words is not enough to describe the long struggle that many many women have had to bring this to the public eye, to get the research done and to ensure that other women are warned. The world is certainly a safer place now and fewer babies will be harmed.

We have at last been offered a government Review into the devastating effect of the drug which will hopefully result in compensation to families affected. Women from all over the country have submitted their heartbreaking stories to the Review to be run by Baroness Cumberlege, a Peer who has a strong interest in health equalities. This is currently underway and we feel that this is ground zero. The damage has been done and we now seek to repair, redress and recover the many families affected unnecessarily by this drug.

Susan Cole
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