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Epilepsy People with epilepsy fear discrimination according to national charity poll

Epilepsy People with epilepsy fear discrimination according to national charity poll

discriminationMany people with epilepsy don’t feel comfortable talking about their condition for fear they will be discriminated against, according to a charity poll. UK-wide charity Epilepsy Action surveyed almost 700 people with epilepsy to explore how they feel about talking to others about their epilepsy.

Of those surveyed:

  • one in five (19%) people with epilepsy said they feel uncomfortable or very uncomfortable talking about their epilepsy with friends
  • one in seven (14%) feel uncomfortable or very uncomfortable talking about their epilepsy even with their family.

The top three reasons people gave for feeling uncomfortable talking about their condition were fear of discrimination (or being treated differently), concerns that people don’t understand epilepsy and feeling embarrassed.

Respondents who are not seizure free[1] were more likely to indicate that they feel uncomfortable talking about their epilepsy, especially in a work setting. Worryingly, three quarters (75%) of people who do not feel comfortable talking with their employer, and are not seizure free, said that they fear they will be discriminated against.

The findings come in the run up to Purple Day, the global awareness day for epilepsy, celebrated on 26 March each year. Purple Day was created in 2008 by then nine-year-old Cassidy Megan, a Canadian girl living with epilepsy. She came up with the idea as a way to dispel the myths surrounding epilepsy and raise awareness positively. The event sees purple-themed fundraisers taking place all over the UK, as well as several landmarks turning purple to mark the event.

Epilepsy Action believes that everyone can do something to change this. They are calling on people to take a few minutes to learn more about epilepsy at epilepsy.org.uk.

Philip Lee, chief executive at Epilepsy Action, said: “It’s frustrating to hear that many people with epilepsy feel embarrassed talking about it, and worry that they will be discriminated against if they do. Epilepsy is certainly nothing to be embarrassed about and these findings highlight why days like Purple Day are so important to those living with epilepsy. The more we talk about epilepsy, the more we can challenge common misconceptions about it and offer the general public a clearer idea of what epilepsy is. We really hope Purple Day inspires people to share and talk about their epilepsy so that more people can begin to understand the condition.”

Source: Medical News Today

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20 Comments

  1. They needed a poll for this? Where have they been the last 1000 years?

    Reply
  2. Not discrimination. I hate being told that I am a liability

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  3. lost several jobs over it.

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  4. Mass discrimination of the silent type!

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  5. I’ve lost several jobs as well

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  6. I can’t get a decent job because of my daughters epilepsy. There’s no one to take care of her but me. All my friends and family work and are not able to help me.

    Reply
  7. I was fired for my epilepsy and my disgusting boss filed as insubordination when i went to her boss. Since lasr May I haven’t been able to find anything in my field because she keeps giving me a terrible refernece. She breaks all kinds of laws and gets away with it.

    Reply
    • Profile photo of Chuck Carmen

      Have you talked to the EEOC Office where you live about it?

  8. I had epilepsy for 40 yrs. And when I was young it was very hard for me to talk about it. Until I made a friend who was born with spinabifitis and wheelchair bound . She said God made us the way we were for a reason and we should look for it and do the best we can with how he made us. She was bound and determined to make people see just because she couldn’t walk didn’t mean she couldn’t be independent and believe me she was. I looked deep and began to see that God wanted me to teach others about epilepsy. And I began to let everyone I met, know about my condition and what to expect if I had a seizure and also what not to do when I had one. I have educated many many people. I just retired after 40 yrs of working for the St of Fl.. So don’t be afraid of or ashamed of being different. Show everyone that you are special and teach them not to be afraid. I had brain surgery 20 years ago and am blessed to be seizure free ever since but I do remember my past and what God made of me. God bless each of you.

    Reply
    • Profile photo of Chuck Carmen

      Love it! Thanks for sharing.

  9. Have seen it happen to my son!! 🙁

    Reply
  10. We get discriminated against all the time all because its a hidden disability that isnt visible to the naked eye. I deal with it all the time and its effected my self worth.

    Reply
    • Profile photo of Chuck Carmen

      Keep fighting. You may be a person with epilepsy but don’t let epilepsy get you! You are a valuable person!

  11. I remember several times that I couldn’t get a job because I had seizures and yes I too have been fired from jobs for my seizures

    Reply
  12. That’s the Way the Jobs and People Treat US Epilepsy people That’s Why We Better Get Together Go Marching Down to Washington DC White house and Ask them to Get US Epilepsy people a Damn!!!!! CURE!!!!!!

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  13. I had my first seizures at my job, both times I was in danger of loosing my life if it hadn’t been for a co-worker finding me. After the second or third one, they let me go. I can’t drive, work or even take a bath (showers only)…epilepsy sucks so bad. Idk how people can sit there and say “epilepsy doesn’t run my life” unless it’s totally controlled, that’s a bold faced lie!

    Reply
  14. God bless you’ll wonderful people have a great blessed day.

    Reply
  15. Epilepsy and Psychiatric Drugs like Neurontin Double Risk of Suicidal Behavior

    http://health.medicarepublic.com/epilepsy-and-psychiatric-drugs-like-neurontin-double-risk-of-suicidal-behavior/

    Reply

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