Wanted: Epilepsy stars

Epilepsy sufferers and support groups will be fully aware that last week was National Epilepsy Week, but I am not convinced that the message reached the majority of the British public. When I consider why that is, for me it boils down to one thing, where are the celebrities with epilepsy?

For example, earlier this year, Catherine Zeta Jones admitted to having bipolar disorder and suddenly every women’s magazine was running an article on the condition. The profile of other conditions, such as cancer, eating disorders, mental health problems and addictions, have been raised by a celebrity admitting to suffering from them. So where are all the famous epileptics – the actors, sportsmen, singers, authors, artists and television stars?

Before researching this blog, I could not name one celebrity sufferer off of the top of my head – I have never heard a star talk about epilepsy. When I looked at Wikipedia I found that there were household names that have suffered from the condition:

Danny Glover (actor), Rik Mayall (comedian), Neil Young (singer), Prince (singer), Florence Griffith Joyner (athlete), Jonty Rhodes (cricketer) and Max Clifford (PR guru). The list also included historic names such as Socates (Greek philosopher), Julius Caesar (Roman military leader), Napoleon (French military leader) and Joan of Arc.

However, according to the statistics one in 131 people in the UK alone have epilepsy, so surely there should be more celebrities with the condition. Why are they not talking about it?

After giving this much thought I came up with these reasons: Firstly that epilepsy sufferers are not talented enough to gain celebrity status, which I do NOT believe for a second. Secondly, that there are famous people with the condition, but for whatever reason they are choosing to hide it. Thirdly, society is so discriminative that people suffering with epilepsy are being held back and stopped from making the big time. Or maybe it’s just fait.

Whatever the reason is, we need it to change, to make people more aware of what epilepsy is. I have a friend who had to have a kidney transplant and people are happy to talk to him about his prognosis and treatment. For me epilepsy is a conversation killer, people do not know what to say and I end up talking at them. I believe that if a celebrity spoke up for epilepsy it would raise awareness hugely and, if that star actually suffered from the condition, it could help inspire a whole generation of future epileptic celebrities.

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26 Responses to “ Wanted: Epilepsy stars ”

  1. I have been trying to argue this argument for a good while now, I’m actually glad that someone else has realised the same thing ;-)

    • andy.morley says:

      Hey, thanks for the comment, It’s such a shame that in the modern day, the people who help sell newspapers and often have the strongest or loudest voice are the Celeb’s

  2. Mandy says:

    Hey there i am a Epilepsy sufferer too and i have found that there is always things on TV about cancer and other similar charities but as for Epilepsy there is nothing about it. Oh i did watch the bit about David Platt on Coronation street having epilepsy but i found they didnt do enough on him like after care or going for scans.
    As for the celeb’s for having illnesses i think they are too ashamed to admit they have these sort of illnesses.
    I have had Epilepsy since back in mid 80′s and alot has come from back then. I have now found a group in my area i can look up to and share my thoughts too as well im going to the first meeting on sunday which will be grate meeting new friends.

  3. My Boy would love to know which stars have got epilepsy like him he feels so isolated at school. Even though I am the mother of a boy with epilepsy had no idea it was National Epilepsy Week last week….if I had could have done something about it at school….

  4. Pen says:

    Lauren Pritchard a singer/ songwriter has epilepsy and talks really frankly about it, and National Epilepsy week. Her music is amazing as is her openness.

    Other than that, doesn’t Jenni Murray (or someone from Women’s Hour) but that aside, I can’t think of anyone current and famous per se.

    Why not tell our own stories then, make celebrities want to come forward in solidarity with us? What we achieve is surely just as important/ relevant as someone whom society deems worthy of press for being pretty in front of a camera?

    Sorry, but the cult of celebrity isn’t one I’m fond of.

    • Julie says:

      Having just read your comment – maybe a little late in time, but can only say I agree with you completely and find it utterly insulting that ‘being famous’ whatever that means, makes your story more important or interesting.
      Surely it just means that you risk a great deal of publicity which is simply dealt with by papers etc as ‘sensationalism’.
      I perfect example would be what happened to me. I wrote an article about epilepsy week for a magazine (about 40,000 copies a month) for which I write monthly about cakes etc. It was balanced, brief, sensible reference to my ‘epilepsy experiences’ just to show I had knowledge about being epileptic so to speak! 75% plus of the article being, historical facts, medical information and promotion of Epilepsy Organisation etc. No problems received lots of understanding and sensible questions. As a direct result was asked for an interview by a paper. Not keen, but brilliant journalist, who I actually know (!) she had promised to speak to epilepsy action, they waited the call, she was also bringing into the article a local nursery school who had made tremendous ‘award winning’ plans to intergrate a little boy into the school with a carer. The article, ok everything I had said, but not necessarily in the right order, totally dramatic and sensational, indeed some of the facts were actually wrong – due to lack of understanding what I had said.
      So the lesson is there to be learnt by all means grab the ‘celebrities’ you are begging for but be warned, the papers are generally speaking after sensationalism even the headlines will almost certainly deal with the subject in that manner.
      Pen I agree with you totally and after all no one is famous unless we make them so by admiring their skills etc. If they are not honest or able to say (for what may be totally realistic sensible reasons) why on earth pleading with them will be of any use?

      • Julie says:

        Sorry! having read my reply to Pen I did not make it clear that the newspaper article did not mention a word about the little boy whose nursery had one an award nor contact Epilepsy Action it was just about me me me! Not atall how I had forseen the article, live and learn.

  5. lizwells says:

    I wish it wasn’t the case, but the only way to raise awareness of the condition in any meaningful way is to get it covered in the mainstream media, and I am afraid they aren’t interested in Joe public having a seizure, unless it’s an extremely heart-wrenching story or a slow news day.

    The one celeb that has particularly annoyed me on this subject is Posh Spice … according to numerous press reports her middle son Romeo has photosensitive epilepsy and had a fit as a result of the paparazzi following them. She announced it to stop the paps doorstepping them, so for her own advantage, but has she once talked about it to raise awareness of the condition? Not that I know of.

  6. Richard says:

    I have often thought about this. I was taking my son to Dallas, Texas for the keto diet in 2001, Graham Norton out of the blue sent out 2 cheques for £500 to help (so generous) and I wondered why, he must have close ties a family member, since then i have always asked the same question.

    My son Connor has spent many months in hospitals, 1000s of seizures, 13 years on and just last week at GOSCH during National Epilepsy Week he was diagnosed with dravets syndrome. Why didn’t I know about National Epilepsy Week? I’m in the loop so to speak and a member on various epilepsy and sudep facebook pages.

    If my whole family arent to know how the hell are we going make sure the majority gereral public know? If only a star could come forward they are obviously out there, and sorry to say, but to have a seizure in public would be a media bullet that would bring this forward.

  7. Liz Wells says:

    Another “celebrity” I forgot about … http://ow.ly/53K3W … At least he is speaking out and trying to raise awareness!

  8. Cara says:

    Victoria and David beckhams son Romeo apparently has epilepsy
    but nothing ever gets mention anywhere about epilepsy

    • Julie says:

      Maybe that isn’t for any reason, other than that they want him to be ‘protected’ from the attention which would be drawn to him. Not detailing or referring to it constantly means that the little boy can get on with his life normally. Their other boys seem well balanced and happy so why allow him to endure the pressure publicity would put on him?

  9. Comments posted here are very interesting. We’re always looking for people to come forward who would be able to tell their stories about living with epilepsy as this helps us gain the interest of the media and raise awareness.

    If you are the parent of a child or young person with epilepsy then please get in touch: jlavabre@ncype.org.uk.

    As for National Epilepsy Week, add our website to your favourites and find us on Facebook. We publicised it this year and certailnly will next year also.

  10. [...] The lymphoma charities get quite a lot of press coverage. They have a fierce supporter in Geoff Thomas, the former England and Crystal Palace (Eeeeeagles!) football player, who suffered from Leukaemia. At the end of last season Crystal Palace donated one half-time interval to Geoff, he spoke about the blood cancers and told the stories of several sufferers. The 16,000 people in the crowd were each given a red card (pictured – which said: Give blood cancer the red card) to hold up and the event was picked up by the media. Sadly epilepsy doesn’t get that kind of support and publicity … but you already know my opinions on that!  [...]

  11. Mary Shek says:

    I am an epileptic patient , still cannot share this to anyone.but yes i agree if media or some famous celebrities will raise the awareness regarding this issue , will help my kind of patients to live confidently.or you can say we also can live normal life.

  12. Guy says:

    HI. I found your article and the responses very interesting. Particularly the part about Lauren Pritchard. I recently did an MA investigating the place of Music in the field of Epileptic Art, and this precipitated the composition and recording of 20 songs/pieces of music based around living with epilepsy, both from the sufferer’s and loved ones’ perspective. If anyone is interested they may wish to visit the website http://projectmea.ning.com/ which was also part of this 2 year work. I shall continue to follow this conversation. Best wishes to you all, Guy.

  13. Pete says:

    I believe that Martin Kemp has controlled epilepsy as a result of two brain tumours suffered in the 1990s

  14. Kerrie says:

    I can’t remember his name but there’s a band called The Streets and the lead singer apparently has epilepsy. Victoria and David’s son has it but yet they dont do anything like awareness/fundraising for epilepsy charities. Ainslie Harriet gave some money to charity and i was able to thank him in person (i was chuffed lol). A lot of seizures can be controlled so maybe celebrities with controlled epilepsy dont feel like they need to speak out.

  15. Teri Strong says:

    Hello, Thank you for this cite. I have wondered why celebrities who have epilepsy don’t come out more often. Yet, when I had small celebrity status as Miss Indiana of the Miss America Pageant I didn’t speak up. I was afraid. That was years ago. I’m not afraid anymore. I’m not a celebrity now, even on a small scale, but I am a Ph.D. in epilepsy research and would be happy to offer the courage I gained to empower others. We don’t have to hide. It takes courage to live with epilepsy.

  16. Moi says:

    Sad as it is there is still degree’s of stigma attached to epilepsy, we have come a long way since the dark ages when it was considered to be possession of the devil. In society today people with epilepsy are still persecuted in different ways for their honesty in wanting to share the condition they have, many have maybe had it since childhood or since their teenage years and been on medication ever since that time which may or may not fully control it.

    For actors being honest I salute them, but I can equally understand why they may hide their condition.. it would undoubtedly restrict the roles they play and also on an insurance level would prevent them from being the full actor or actress they might be today. sad as it is this ultimately reflects upon society even in the 21st century when things are so different yet by no means fully addressed.

    When people are diagnosed with Epilepsy it makes them feel isolated and alone with their condition, it makes them suddenly feel different from those who are their friends and family, a different kind of mind-set cuts in and this can be more the case in teenage years when they may already be wrestling with image issues and trying to wrestle with the pending prospects of adulthood.

    I think in the early years it’s fair to say with each seizure that takes place one feels knocked back further and should it happen in public one may feel mortified and even more so if friends were around to witness the event. Most peoples first experience of a seizure tends to end up with them damaging themselves, from this point on one gets medication and hopefully eventually leads some or complete control but this does not mean cure.

    Some who have seizures in childhood may grow out of the condition by the time they reach adulthood but the biggest problem is isolation and feeling alone, it does help to see successful people revealing their condition such as TV personalities and sporting stars, it can be empowering and positive rather than negative. People who do not understand the condition may sometimes fear being around people who have epilepsy purely out of ignorance, there are different types of epilepsy and it’s important to know if somebody is epileptic because you can help should they go into a seizure.. the biggest danger will always be hitting their head badly, or not coming out of the seizure in good sharpish time.. at which point an ambulance should be called to be on the cautious side.

  17. Hope Elizabeth says:

    Yes. it is very sad, before I started having seizures , I was on my way to being a star. I personally feel like it was a mixture of dealing with these new things such as seizures, memory loss. When I was In Highschool ( senior year ) I was complimented by broadway directors for my acting skills, and told I could seriously make it big one day. That was about a month before my first seizure… then when I majored in Theatre, a few months into the program, I was constantly being told that I was “slipping out of character” and my memory wasn’t the greatest.. and I would pause in innapropriate places. I believe that if my teachers would have worked with me , we could have gotten past those newly found issues, but instead my teachers had given up on me. This year I was diagnosed with E, and suddenly I realize all of those things were directly related.. I was being discriminated against, and held back and I didn’t even realize it. I had told myself it was because I hadn’t tried hard enough, but in all honesty I gave it my all at the time.

  18. I was given wrong injection at 18 months old just wish something can be done about it now im 41

  19. I got barred from a pub in bideford north devon as i had a fit in there

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