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Last Updated: Sunday, 10 September 2006, 22:50 GMT 23:50 UK
Celebrity Health - Rabbi Lionel Blue
Rabbi Lionel Blue
Lionel Blue: Diagnosed aged 57
In a series on celebrities and their health, the BBC News website talks to Rabbi Lionel Blue about his epilepsy.

Lionel Blue, aged 76, is a British reform rabbi and broadcaster. He is also the first openly gay British rabbi.

Rabbi Blue is best known for humorous and off-beat comments on life, most notably on Thought for the Day for BBC Radio 4's Today programme.

He talks about his condition to promote the work of the Epilepsy Research Foundation charity.

HOW DID YOU FIRST REALISE SOMETHING WAS WRONG?

I started to notice that I felt seasick quite often when I was simply going about my day-to-day business.

There once was a time when people used to think a person who was having a seizure was drunk
Rabbi Lionel Blue
I'd be pottering around the house, doing nothing in particular, but I kept losing my balance and feeling nauseous.

It was a bizarre feeling because I couldn't figure out what was making me feel that way.

HOW DID YOU GET DIAGNOSED?

I just put up with the nausea and tried to carry on as normal, but a few months later I experienced my first seizure.

I was first diagnosed at 57.

I remember coming to in hospital, wondering why a doctor was doing tapestry work on my scalp.

I'd been lucky, he said. I'd gone rigid, turned blue and crashed my head on the kerb.

That was when I was told I had epilepsy.

WHAT WAS YOUR REACTION TO THE DIAGNOSIS?

At first I was a little unsure about what having epilepsy actually meant.

Of course, I had heard of it and knew people with it suffered seizures, but apart from that I didn't know much else.

I found out that there are over 400,000 people in the UK with epilepsy and that I was one of an average of 75 people that are diagnosed with it every day. I also felt an overwhelming sense of relief because finally everything made sense.

WHAT WAS YOUR TREATMENT?

I was put on anti-epileptic medication and I began to wear dark glasses as flickering neon lights triggered my seizures, but I still had two or three seizures a week until the doctors got the dosage right.

Epilepsy is a largely unknown disorder as it's not clear what causes it and there is not one magical cure.

Brain scan. Credit: Tim Beddow/Science Photo Library
Brain scan of someone with epilepsy

In fact, in over 60% of cases there is no identifiable cause, as with me, (although acute depression and flickering lights both play a part in my case) and only 52% people with epilepsy experience successful treatment.

Therefore, prescribing treatment is often done on a trial and error basis to see what works best for the individual.

HOW DID YOU FEEL DURING THE TREATMENT?

Relieved. Luckily there only needed to be a couple of tweaks in my medication before I found an effective treatment.

It's not very nice to live with the fear of epilepsy hanging over your head, not knowing when your next seizure is going to be.

I'm thankful my doctors have found an effective treatment for me.

I haven't had a full blackout for over four years now, so it seems to be working.

HOW DO YOU FEEL NOW?

I have accepted the condition as part of my life now and I realise it's something I have to live with.

However I am filled with curiosity about epilepsy. It is such a mysterious condition and I think it is important that we do more to uncover its causes, treatments and effects.

I have become a patron of the Epilepsy Research Foundation, which provides funding for research projects.

Ultimately, I feel lucky that I am able to carry on living with the condition and that I have found an effective treatment.

I know many people with epilepsy find it an incredibly frustrating condition and it can have a profound effect on someone's life, especially if there is no pattern to their seizures and they can't predict when they will occur.

WHAT IS YOUR MESSAGE TO OTHER PEOPLE WITH THE SAME CONDITION?

There seems to be a terrible stigma surrounding epilepsy, so I would ask those with it not to feel ashamed or embarrassed, and for those who don't have it to be more understanding.

There once was a time when people used to think a person who was having a seizure was drunk!

Gradually people are becoming more and more educated.


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