Something very cool is happening 21/1/2013

On this date I will be 13 years seizure free and to celebrate the event I wanted to do something on this forum. I want to post a little bit about Epilepsy on this page along with advice if you see someone having a seizure in public and how to care for them during and immediately after. I'll also leave the link to a few websites for reference if anyone is interested in possibly doing something to help. I appreciate that it's a Queen site but they are the reason I'm seizure free and I want to help stop the stigma attached to epilepsy even if all we do is educate it's half the battle.

Hx

that sounds really great. we are supportive all the way! i would love to be educated about things i really dont know much about haha
If I may ask, how is Queen the reason you are seizure free? just curious how it helped you haha

The music gave me a reason to fight, because if Freddie had AIDs and gave all, then I could too. The music was also very calming and helped relax me if I felt stressed which was a primary cause of my seizures. They are so special to me because of this.

I faced bullies because of the Epilepsy who would try to make me have seizures but so long as I had Queen and my family I was happy.

very inspiring bullies are arseholes! gosh! they tried to make you have seizures! that is low even for bullies! poor you! let's keep you seizure free forever

Thanks love. It's a great thing, I am so thankful everyday

that's really amazing, im so glad to hear! :)

Thanks I do try and raise awareness every year. It makes me happy to know that I can help others whether it's educating them or showing them that there is support out there

I'm proud of people like you:) go Hannah!!!!!! I've been talking to daria(my hairdresser friend) and her sister had seizures and I told her about you and she was very happy someone was telling other people about it

Tell her it's my pleasure, not enough people know what to do when some has a seizure. Most of the time they'll laugh and think it's funny. We will stop stigma stat

It's one of my goals to help others

I believe in you

Thanks. I want to raise as much awareness as possible

That's a brilliant thing to hear about how Queen helped you and I'm so glad for you that you've been well for so long now
Would love to hear about things I can do to help in case it happens to somebody in the future e.g. in the street

I'll create a special topic for it, as well as links to sites for support and for fundraising. The lyrics to "Is This The World We Created" resonate when I think about the stigma attached to epilepsy. I'll also post up warning signs of a seizure, how to care for someone who is having a seizure and will also post links for leaflets/posters if any of you are at university or even in the workplace to help raise not only awareness about the condition but how helping someone having a seizure saves their life.

There will also be case studies from myself and a girl who I support online who suffers from Epilepsy. I'm also in the middle of writing an article about music therapies and neurological conditions. Any questions you have I will try to answer as best as I can - I don't have much memory from that time due to the nature of how epilepsy damages the brain. It wasn't a curse just as AIDs wasn't a curse for Freddie, because as a result of it it gained more publicity and became more of a social cause to help raise money for treatments/research. That is my aim.

how badly,in your personal opinion, does it affect day- to- day life?

It mainly depends on the type but it can be quite debilitating during the summer because something as simple as being in the sun too long can cause a seizure. When I was at primary school I suffered badly from bullying so stress also caused seizures. It really does depend on the type as there are over 40 different types of epilepsy and over 40 types of seizures. I remember being in hospital at least once a week for a period of about two or three months.

oh that's horrible

poor you

And I was in a coma for 36 hours at one point because if you don't come out a seizure after half an hour you're classed as Status Epilepticus which means epileptic coma

Oh my! Poor you! How old were you?

7 I think