Claire, Scotland

Claire, Scotland

Clare, now 20, was diagnosed with epilepsy aged 6. She had had an “unusual feeling”and had alerted her sister, Megan, who was able to see changes in Clare’s face. The doctors were unsure what was wrong until she had a seizure during an appointment, and a diagnosis of epilepsy followed. Clare has since been diagnosed with cortical dysplasia, a common cause of epilepsy in which before birth some neurons in the developing brain do not migrate and position themselves correctly.

By the time Clare was around 10-years-old she was having tonic clonic seizures during sleep. Clare feels that epilepsy has positive and negative aspects. She volunteers in a school for children with additional needs and she feels that her epilepsy allows her to understand what it is like to require care sometimes or to be treated differently. However, Clare also thinks that some people do not understand epilepsy because it tends to be a “hidden condition”; epilepsy is not visible or evident in Clare unless a seizure is taking place.

Growing up, Clare found school difficult. She missed a lot of school due to her epilepsy, and feels that this impacted on her self-esteem and confidence. She also experienced mood changes prior to seizures and felt that this was at times misunderstood too.

In 2014, with the support of her family, Clare and her epilepsy specialists began to look into the possibility of surgery. After extensive tests she was deemed eligible and, despite the risks, decided to go ahead. Clare took the whole process in her stride, even when she had difficulty with speech after her operation. However, once her brain had “re-wired”, she was able to get her full vocabulary back.

Clare is now much happier and has not had any night-time seizures since surgery, although she is having some minor myoclonic jerks during the day. Clare has been incredibly brave and positive in how she has approached the obstacles that epilepsy has put in her way, and has used her experiences to help and support other young people with epilepsy who have benefited from her informative, straight-talking approach and sunny outlook.

She volunteers for Epilepsy Connections, supporting children with epilepsy at activity days and at an adventure weekend in the Scottish highlands where her practical and emotional support was invaluable for the young people who took part. Clare also undertakes fundraising activities for epilepsy organisations and has written an online blog to share her experiences. In the future, Clare hopes to continue to be seizure free. Once she recovers fully from surgery, which could take a year, she would also like to move towards working with children.