Tag Archives: Chalfont

Suffolk epilepsy care

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

EADT coverage can be found here:

Epilepsy in Suffolk: Caroline Page's view  EADT
EADT coverage for Caroline Page's concerns about epilepsy care

I’m raising money for the NSE – Please sponsor me!

I’m raising money for the National Society for Epilepsy – a boringly-named charity that does an unbelievable amount of good!

Did you know that:
* One in 20 people will have a one-off epileptic seizure at some point in their life (although this does not necessarily mean that they have epilepsy).
* One in 50 people will have epilepsy at some time in their life (not everyone with epilepsy will have it for life).
* Around 75 people are diagnosed with epilepsy every day.
* There are around 456,000 people in the UK who have epilepsy. That’s about one in every 131 people. There are around 50 million people with epilepsy in the world.
* Only about 3-5% of people with epilepsy will be affected by flashing lights (called photosensitive epilepsy)
* You don’t know how many people with epilepsy you know: Over 70% of people with epilepsy are completely seizure-free via drugs.

For the last few weeks i have been cycling and taking the train to Bucks where my daughter is in hospital. In ten years the medical profession have yet to manage to stabilise her horrible epilepsy – but if anywhere can, it is this place!

On 5 September I – together with my cousin and my young son – am cycling the whole way from Woodbridge to Chalfont St Giles (106-120 miles depending on route) to raise money for the charity behind the healthcare. Please sponsor us: http://www.justgiving.com/Paul-and-Caroline-go-visiting