About 5,500 people in Suffolk have long-term epilepsy, yet it remains very much a Cinderella condition, kept secret, inadequately recognised and poorly funded. People are often anxious to prevent others know they suffer from it because they fear stigmatisation ostracism and discrimination – with good reason. Yet over 70% of people with epilepsy are completely seizure-free through drugs and are leading ‘normal’ lives. The other 30% (including my daughter) live in hope. For the last few weeks she has been lucky enough to be seen at the NSE Sir William Gowers centre – the last port of call for people who difficult-to-control epilepsy – while they try to stabilise her condition.
There are generally about twenty people here being assessed: she has already met several others from Suffolk