Tag Archives: Caroline Page

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

Giving my 128th pint of blood…

Here’s a scary fact: 96% of us rely on the other 4% to give blood.

So, if you’re generally healthy and aged between 17 and 65, why not do something amazing? Give blood too. The NBS staff down at the  Woodbridge Community Centre sessions  will only be too glad to help you.

I started very regular blood donation when my brother – who had the same blood group as myself – became ill with a rare cancer, and every couple of weeks would need pints of blood as a transfusion. His illness lasted no more than six months – and that was  thirty years ago.

Do you know, all the blood I have given since then, all 128 pints of it,  would probably only just about cover the amount he was given during his illness. It really makes you think.

Heres a picture  I took on Friday last as I gave my latest pint down in Woodbridge Community Hall.

It takes very little time to donate a pint of blood. (And you get a fab range of biscuits afterwards..)

They have regular blood donation sessions in Woodbridge, Kesgrave and Martlesham as well as a number in Ipswich. You can search for a session here:

http://www.blood.co.uk/SessionSearcher/Search.aspx

Please don’t leave it to someone else.