At the 2017 National Conference in the Clayton Hotel last Saturday, Epilepsy Ireland recognised two special volunteers.
Brenda Quigg
The first recipient was Brenda Quigg (pictured right), from Balla Co Mayo. Epilepsy first crossed Brenda's path about eight years ago, but despite being a qualified nurse she didn't recognise the early symptoms like and it was only after her first tonic clonic seizure that she was diagnosed.
The diagnosis had a huge impact on her life and she was confronted by the realisation that awareness of epilepsy and health services for people with epilepsy in the community are not always ideal. However, Brenda's positive outlook soon shone through and she decided to take action.
One morning in late 2014 she woke up with an idea – to organise a cycle for epilepsy. Within just a few months after much hard work, over 250 cyclists took to the start line in Castlebar on a cold February morning to mark International Epilepsy Day. The event raised a fantastic €15,000 and just as important, there wasn't a person in Mayo who didn't know about it. In 2016, the event was back again with over 400 people took part from all over the country and an incredible €35,000 was raised.
Karen Keely
Karen Keely (pictured left) was diagnosed with epilepsy as a child and was put on the drug sodium valproate (Epilim) to treat her seizures. Today we know that it should not be taken by women of childbearing age because of the risks to the foetus in the womb. This is now known as Foetal Valproate or Foetal Anti Convulsant Syndrome (FACS for short). However, Karen was never fully advised of the risks and continued to be prescribed valproate throughout her three pregnancies and all three of her sons – Harry, Lee and Lorcan have been affected by FACS.
The consequences of sodium valproate have dominated her life. Her sons have all had repeated medical, surgical and clinical interventions and two require lifelong care. Despite all the difficulties and challenges that this has brought, and the battles she has had to endure for her family, Karen has for the past decade devoted herself to raising awareness among other Irish women with epilepsy of the risks of valproate and fighting for recognition and justice for the families affected.
She has set up the Irish branch of OACS, Organisation for Anti-Convulsant Syndrome. She brought about the formation of the FACS Forum, a group of organisations including Epilepsy Ireland who have come together to help deliver on Karen's campaigning. She is a true epilepsy advocate who would go to the ends of the earth not just for her own boys but for all the mums and children out there who are similarly affected or who are at risk.