Where are the celebrities with epilepsy?

So, Kelly Osbourne is recovering in hospital after having a seizure while filming her TV fashion show. She probably feels pretty dreadful right now – I’m guessing headaches, memory loss, aches and pains and fatigue for starters – and I wish her a swift recovery and a swift diagnosis.

Her seizure could have any one of a number of different causes, but if she is diagnosed with epilepsy, I hope she will speak out about it.

Can you name any famous people with epilepsy? You might say Julius Caesar and Alexander the Great, and even Vincent Van Gogh or Joan of Arc if pushed.

But can you name any contemporary famous people with epilepsy? Without any help from Google, the only people I could think of were Olympian Dai Greene and actor Rik Mayall. Google also gave me actor Hugo Weaving and DJ Edith Bowman.

My Googling also brought me to Epilepsy.com’s list of famous people with epilepsy, but even that site somewhat mournfully admits:

Today, celebrities with epilepsy remain “in the closet,” concerned that going public with their epilepsy will result in negative treatment and harm their employment opportunities. This is a shame, because people living with epilepsy – people who are neither geniuses nor celebrities – deserve to have role models to inspire them, and leaders to raise public awareness and understanding of their disorder.

There is no denying that we live in a celebrity-obsessed world (heck, Heat magazine is my guilty pleasure) so just think of how much of the thousands of years of stigma could be destroyed if a big name star spoke out. Think Michael J Fox and Parkinson’s, or Kylie Minogue and breast cancer, or Stephen Fry and bipolar disorder. Their openness has done so much to raise awareness. One in every 131 people in the UK alone has epilepsy, so there must be some household names out there.

I have never personally suffered any major instances of prejudice (lack of understanding and even embarrassment are the most common reactions, which I am always happy to address) but you regularly see inaccurate and unhelpful things written in the media.

People with epilepsy can be just as successful as anyone else. We don’t have to be ashamed. So if Kelly Osbourne does end up joining us, I hope she will feel able to talk about it when she’s ready. It would be great to see epilepsy discussed in a more positive way that can inspire us all.

13 thoughts on “Where are the celebrities with epilepsy?

  1. I pray that someone comes forward to educate people on Seizure disorders that affect so many people. My healthy 26 year old started having seizures when he was 22. He does not drink or do drugs, but he does get stressed out easy.

    • He sounds like me! Never touched drugs, not a big drinker, but quite a worrier. I hope he has managed to control his condition. The more people who speak up, the more awareness there will be.

  2. First one aged 4. Never known life without them 7 years fit free but still get affected by the negative stigma attached 😦

    • Katie, So glad to hear you are seizure free. My son has tried 4 differant medications and seems to be drug resistant. We have been at UCLA for 11 days having a VEEG.

  3. I received another comment on this story but they posted on the wrong post, and I can’t figure out how to move it! I’ve copied it below:

    Hi! Yesterday I was reading a bunch of blogs and I found that Prince has had epilepsy since he was a child! Who knew!? He said he dealt with it by going “into self” and teaching himself to play the guitar that his dad left behind at the house when he left the family! I love Prince and now I look at him so differently, in a good way. Look how much he has achieved in his career. Now I also understand why he is always so private, seems so mysterious and appears withdrawn. It was his way of coping. He said people made fun of him as a child. So he probably was just always a loner growing up. He probably felt safer alone and just playing his guitar, learning how to play music and be creative…It all makes so much sense now.

  4. Had a seizure last Mar and a relapse recently in May, hence i was diagnosed with epilepsy. I’m 15 years old this year and even with all this information on the internet and how i just found out that i wasn’t like a freak or something, i felt really glad as i have been teased by my brother ALOT and honestly, that didn’t make me feel good. The reason for my relapse was simple. I didn’t eat my medication but after the 2nd time i visited the hospital, i made it a note to eat it but it was more like a chore to me as the side effects can be bothersome too. But after finding out how normal people and other celebrities are doing and how they themselves are stepping out to be an example, it definitely made my life so much better! Thanks for stepping out! 🙂

    • Hi Tiffany, thank you for your comment! I’m happy to have encouraged you. You have a wonderful life ahead of you! Listen to your doctors and ignore your brother!

  5. I have been dealing with epilepsy since 7th grade (I am 24 now). I have never found that the medication prescribed to me worked. I had at least one seizure a year, not to mention horrible side effects- numbness in my hands and feet, headaches, nausea. After trying more than 5 different medications, and over a decade of different combinations of those drugs, I finally had reached a breaking point. I was attending college in Boston and had a seizure not one minute after stepping off the train. It could have been much worse.

    I researched alternative ways to treat epilepsy, and came across medical marijuana. It has now been FOUR fantastic years of seizure free life! I am not saying that medical marijuana will work for every case, but if you are desperate and nothing else seems to work, I would definitely recommend trying it. Not only am I seizure free, but I have not noticed any side effects. I do not even get a “high” feeling, it just brings me from feeling dizzy and unoriented, to normal and well balanced.

    • Have you heard of the #AJO Movement. Its a very inspiring, but sad story but its really helping to spread Epilepsy Awareness by Alyssa O’Neills parents wanting to do a simple act of kindness in their daughters memory and now it has people all over the world paying it forward in honor of her
      story 🙂 Janet Terterian

  6. Pingback: Top five posts of 2013 | Hannah Hiles

  7. I’m guessing headaches, memory loss, aches and pains and fatigue for starters – and I wish her a swift recovery and a swift diagnosis. Hannah this is how you speak of a seizure or epilepsy and why many people are “in the closet” I have Grand-Mil seizures clearly horrible and the worst type, you just move on it’s no biggie I have had them since I was 14 and I am 49 no big deal yes right after an episode I am tired and bummed that I had one but it is what it is.Same meds twice a day for the last 20 years and my seizures are minimal, living clean and stress free has always been the ticket. Remember we have Epilepsy not leprosy.

  8. Pingback: Telling my epilepsy story for Purple Day 2014 | Hannah Hiles

  9. Pingback: Top five posts of 2014 | Hannah Hiles

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