Help us raise £10,000 for epilepsy research!
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Hello! Here we go again... Sorry... I'm fundraising.
When Salma developed epilepsy in 2020, the absolute worst thing about it for me was the unpredictability of it all and the lack of answers to really important questions. Why has this happened? No one knows. What's causing the seizures? No one knows. Will medication fix it? Maybe, medication works for some people, but it's sometimes a case of using various different drugs concurrently and adjusting the levels until they're right. Then it might not work for long. Will it go away over time? Maybe. Will it get worse over time? Maybe. Will changing diet fix it? Maybe. Will brain surgery fix it? Maybe. Is it fatal? Sometimes - 1 in 1000 people with epilepsy will die due to a seizure every year. That's too many for me.
Don't get me wrong - the things that the medical community are capable of are nothing short of incredible. The fact that there are people who can look at squiggly graphs and translate that into meaningful information about brain activity, and that there are people who can just open up a skull and jiggle some bits around and fix bad electrical wiring in the brain is mindblowing. And all the other little tricks and tools they have up their sleevies... it's all very impressive.
But there are just so many unanswered questions about epilepsy, and those answers could help people live with epilepsy so much more comfortably.
There's also a huge inequality in medical research and epilepsy doesn't get the funding it needs, especially when you consider the number of people with it. 1 in 100 people in the UK have epilepsy and 1 in 26 people will have some sort of experience with epilepsy in their lives - ie they'll get it, have it for a bit, and then move on without it. That's a lot of numbers, and it's a lot of people who have to go through some very scary experiences. Just for some numbers, there are currently around 150,000 people with Parkinson's, and the funding into Parkinson's research works out at about £234 per patient per year. There are around 650,000 people with epilepsy, and the funding works out at £21 per patient per year.
Now hear me out - I'm not saying that Parkinson's has too much money for research - not at all. But these numbers should be equal. And epilepsy affects kids and teenagers who are just starting out in life - and it can ruin things for them, for good.
I would absolutely love to know that Salma's life isn't going to be too badly affected by this. I've met people on Instagram etc who have uncontrolled seizures and can't work as a result, and I'd love to know that a medical breakthrough will help them to live fulfilling, happy, comfortable lives. I'd love to know that Salma could be 100% independent, and know that if she had a seizure while she was out and about, someone around her would know what to do.
Funding epilepsy research will help towards those little goals.
So... we've decided to take on a MASSIVE challenge by doing lots of little challenges along the way. We want to raise £10,000 for epilepsy research and we're giving ourselves four years to do it. We're going to do lots of little bits of fundraising along the way and some bigger challenges and then hopefully one huge challenge at the end.
Please forgive me while this takes over our lives (and yours) - it's a nice distraction from the epilepsy and we're doing something good for us and for others. In all honesty, doing something like this stops me feeling so totally powerless over something that's muscled its way into our lives and thrown us both about a bit.
We're going to be setting ourselves little challenges, for which we will be begging for sponsorship, we will be selling stuff, raffling stuff, and generally being a pain all up in your inboxes for the next ages.
And by the end of it, I'm going to make sure you all know a little seizure first aid too, so you know what to do if you see someone having a seizure. I know of someone who was handcuffed by police as she was coming round from a seizure because they assumed she was drunk and dangerous. I want to make sure that never happens to any other epileptic person ever.
Thank you for getting on board, at least as far as having read this.
When Salma developed epilepsy in 2020, the absolute worst thing about it for me was the unpredictability of it all and the lack of answers to really important questions. Why has this happened? No one knows. What's causing the seizures? No one knows. Will medication fix it? Maybe, medication works for some people, but it's sometimes a case of using various different drugs concurrently and adjusting the levels until they're right. Then it might not work for long. Will it go away over time? Maybe. Will it get worse over time? Maybe. Will changing diet fix it? Maybe. Will brain surgery fix it? Maybe. Is it fatal? Sometimes - 1 in 1000 people with epilepsy will die due to a seizure every year. That's too many for me.
Don't get me wrong - the things that the medical community are capable of are nothing short of incredible. The fact that there are people who can look at squiggly graphs and translate that into meaningful information about brain activity, and that there are people who can just open up a skull and jiggle some bits around and fix bad electrical wiring in the brain is mindblowing. And all the other little tricks and tools they have up their sleevies... it's all very impressive.
But there are just so many unanswered questions about epilepsy, and those answers could help people live with epilepsy so much more comfortably.
There's also a huge inequality in medical research and epilepsy doesn't get the funding it needs, especially when you consider the number of people with it. 1 in 100 people in the UK have epilepsy and 1 in 26 people will have some sort of experience with epilepsy in their lives - ie they'll get it, have it for a bit, and then move on without it. That's a lot of numbers, and it's a lot of people who have to go through some very scary experiences. Just for some numbers, there are currently around 150,000 people with Parkinson's, and the funding into Parkinson's research works out at about £234 per patient per year. There are around 650,000 people with epilepsy, and the funding works out at £21 per patient per year.
Now hear me out - I'm not saying that Parkinson's has too much money for research - not at all. But these numbers should be equal. And epilepsy affects kids and teenagers who are just starting out in life - and it can ruin things for them, for good.
I would absolutely love to know that Salma's life isn't going to be too badly affected by this. I've met people on Instagram etc who have uncontrolled seizures and can't work as a result, and I'd love to know that a medical breakthrough will help them to live fulfilling, happy, comfortable lives. I'd love to know that Salma could be 100% independent, and know that if she had a seizure while she was out and about, someone around her would know what to do.
Funding epilepsy research will help towards those little goals.
So... we've decided to take on a MASSIVE challenge by doing lots of little challenges along the way. We want to raise £10,000 for epilepsy research and we're giving ourselves four years to do it. We're going to do lots of little bits of fundraising along the way and some bigger challenges and then hopefully one huge challenge at the end.
Please forgive me while this takes over our lives (and yours) - it's a nice distraction from the epilepsy and we're doing something good for us and for others. In all honesty, doing something like this stops me feeling so totally powerless over something that's muscled its way into our lives and thrown us both about a bit.
We're going to be setting ourselves little challenges, for which we will be begging for sponsorship, we will be selling stuff, raffling stuff, and generally being a pain all up in your inboxes for the next ages.
And by the end of it, I'm going to make sure you all know a little seizure first aid too, so you know what to do if you see someone having a seizure. I know of someone who was handcuffed by police as she was coming round from a seizure because they assumed she was drunk and dangerous. I want to make sure that never happens to any other epileptic person ever.
Thank you for getting on board, at least as far as having read this.
Organizer
Claire Craig
Organizer
England