Scrubbing up: Your comments

In this week's Scrubbing Up health column, epilepsy expert Professor Mark Richardson says epilepsy should receive the same attention as other causes of sudden death.

What do you think? Here are some of the comments you have been sending in to this week's Scrubbing up.

YOUR COMMENTS

I'm 39 now and suddenly developed epilepsy in my early 20s without any history of it being in my family. Doctors have openly said to me: "We don't know much about it." Which to be honest really scared me at first - thinking that I might die any minute! I've since gone out of my way to get as much info and knowledge on the subject as possible. And my epilepsy is very well controlled with medication. Epilepsy needs to be treated positively. I hid my epilepsy for years because I was scared of the reaction I would receive from people. I'm more open now, as I feel educating people may be the key to getting rid of the stigma attached to the illness.
David Campbell, London

My grandson was diagnosed a year ago. It has taken a year to sort out his medication and this was only done in the last month because he had a severe and long fit at school. My daughter has had to press and bother everyone to get things done every step of the way. We have never been told that there is a risk of death. I'm shocked at the lack of care and support and concerned about side effects of his medication and the cavalier way his condition is treated. He is not the happy carefree boy he was and is very depressed. He has no one to talk it through with and neither do we. He is seven.
Jane Turnbull, Canterbury, UK

My son, who is now 20, has had epilepsy since the age of three. I was fobbed off when he was six or seven when doctors tried telling me it was just learning difficulties. Information was sketchy and the only help we got was a pill and a review after six months. Kings College hospital have been great but cannot do anything for him. So he still suffers, can't get a job so gets depressed. Who has to pick up the pieces? Family. Why are people so scared of it?
Tracy, Portland Dorset

Seeing another human being incapable of controlling their body is a very shocking thing Catherine Coulthard

Seeing another human being in the clutches of a seizure hence making him or her incapable of controlling their body is a very shocking thing to behold. It instigates fear, shock and the thought that, that person is somehow at fault for something they have no control over. It's incorrectly associated to mental illness and that is one of the key factors that people need to understand. If the media create wider awareness with their depictions of teenage deaths on the road or smoking then they can certainly do something about the little known facts of epilepsy. I know because I have a daughter with epilepsy, she's beautiful, intelligent and to look at her you just wouldn't know that she suffers from it.
Catherine Coulthard

Having recently been diagnosed with epilepsy the stigma is something I am coming across now. It was something I knew very little about before my first seizure but this is due to lack of education. Surely it should start at grass roots level, teaching the children that this is not something to be scared about. Every school child can name a handful of their school mates who have asthma but not the same with epilepsy, even though they may sit in the same class as a sufferer. It's time to drag it out from under the carpet and bring more awareness about the conditions and how people can help. I hope that if I ever suffer a seizure in public then someone will be willing to help me, not stand and look in astonishment that I should be allowed out in public.
Lynn Harrowing, Leyland, Lancashire

I have lived in the shadow of epilepsy since 10 years of age. For many years it defined who I was. When I moved away I was able to reinvent myself, and kept my epilepsy hidden from all but my closest of friends, initially to get past the interview stage for work. It's been incredibly difficult to do, and I hold an extremely demanding job but I'm frightened of facing other peoples attitudes/prejudices by being open about myself. Try as I might, the stigma of epilepsy has loomed large over my life.
Ms Average, Kendal, UK

My wife is epileptic. In the past she has been thrown off buses after having a fit Brian Morrison, Bedford

My wife is epileptic, and one of the 20-25% of epileptics whose drug treatment does not provide a complete cessation of seizures. In the past she has been thrown off buses after having a fit, despite the fact that she has a disabled person's bus pass and gets free travel. There are plenty of unkind comments as well, there are still people who believe that the asylum is the place for epileptics, some of these are quite young too.

Epilepsy often appears to be very similar in effect to mental illnesses where the sufferers shout and abuse people in the street, naturally people avoid them if they can.

The only solution is better education, discussion about the condition in school perhaps, and the opportunity to meet and talk to epileptics and understand how their condition affects their lives.
Brian Morrison, Bedford

The report reinforces my belief that in our attitude and ignorance of certain medical conditions we are a nation still living in the dark ages. The shame must start with the medical profession and media that have done so little to educate us in the proper responses to people with strange conditions.
Ian Morris, St Aulaire, France

I've had epilepsy for 31 years having been diagnosed at the age of eight. At first my school mates didn't want to know me as they thought they could catch it off me. However once I told them mine was hereditary (my mum has it as well) they were fine about it.

As I've got older I've just got on with my life, and most people are fine about it as long as I tell them what to do IF I have a fit.

What bothers me is that a lot of people say they know what to do if you have a fit, but if they see someone having a grand mal fit (which is the sort of fits I get) they freak out not knowing what the hell to do!

The one thing that really annoys me is that I can't go anywhere which has strobe lighting (which is what triggers my fits) so concerts are out, unless I can get right to the front and let someone from security know - to keep an eye on me. Nightclubs are ok, as long as I've found out beforehand whether they've got strobe lights or not and if they have, I have to change my plans! I now wear a medic alert bracelet and carry an epilepsy card with me at all times. I'm doing my bit to inform others - why cant nightclubs, musicians etc think before installing strobe lights or come up with something different?
Liz Jones, Leeds, UK

I am one of the 80% mentioned in the article, only having two seizures in 25 years (whilst off medication). I chose not to tell any of my friends about my having epilepsy, probably because of the popular view of the disease. My life is normal and as long as I keep taking a tablet twice a day then there's very little difference between me and a non-'sufferer'. If I were to mention I had epilepsy to them I'm sure it would be fine as they've known me for years as a 'normal' person. However I don't want them to imagine me having a seizure.
Paul, Stafford, Staffordshire

Yes I am using Anon. The stigma associated with epilepsy is enormous, as one that suffered from it for many years, it went as mysteriously as it came. I can assure many people including friends classed me as being mad. Employers were terrified of me, one tried to sack me because of it. Now being free of it still leaves me scared to mention that I once had it.
Anon, Salisbury