Chloe Munro

Our Snowdon Trek 22/09/18

Fundraising for Epilepsy Action
£3,161
raised of £1,500 target
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Epilepsy Action

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RCN 234343
We are creating a world without limits to support people affected by epilepsy.

Story

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Dad and I will be trekking up Mt Snowdon on the 22nd September to raise awareness and money for people living with epilepsy. Epilepsy is a condition that affects the brain. An epileptic seizure is when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.

I myself suffer from epilepsy. January 2016 I was rushed into hospital for an emergency operation due to a major bleed and several smaller bleeds on the brain from lesions also know as "cavenomas" (An Inherited gene) that I have in my brain. As a result of the bleeds, I had 2 minor strokes. I was told it was likely I could come out of this operation paralysed on the left side of my body and I will probably suffer from epilepsy as a result of the trauma to the brain. The operation was successful but I was left with severe weakness on my left side and couldn't walk.

Over the coming months, I had physio to teach me how to walk properly again and gain some strength back on my left side. It took me 2 years to fully recover from the operation but still today I have issues with my left side. Unfortunately, as predicted due to the location of the bleed I now suffer from epilepsy. 

I suffer from a form of epilepsy called complex partial seizures and atonic seizures. A complex partial seizure causes a period of “blanking out.” and an atonic seizure is a type of seizure that causes sudden loss of muscle strength meaning I can collapse out of nowhere with no warning sign. 

The complex partial seizures start's with staring into space, usually with a blank look. If I'm speaking or doing something when a seizure starts I will immediately stop what I'm are doing or saying. I may start blinking over and over which looks like the fluttering of the eyelids or usually my right eye twitches, smacking the lips or chewing movements, rubbing fingers together or making other hand motions also occur. My seizures can last anywhere between 20 seconds - 1 minutes. When I have either form of my seizures, I am not aware of what is happening around me. For example, I will not notice if someone tries to speak to me during a seizure. I also have no "aura" (warning sign) before my seizures so they can occur at any time without any notice, we also still haven't figured out what my trigger for my seizures are. After my seizures I become very confused, I don't know where I am, what I'm doing or who the people are around me. It can take me anywhere between 10 - 20 minutes to fully come back around from a seizure but I will not remember any of it and will loose the majority of my memory of what I've done that day. 

The Atonic seizures are a fairly new form of seizure for me and since developing this type of seizure I have sustained injuries from the collapses.

The first Atonic seizure I had I fell onto our kitchen tiles and ended up breaking some toes and covered in bruises. The second attack was more serious and I hit my right temple lobe (Where the original bleed happened)  which sent my body into shock and ended up having over 30 seizures in 5 hours - This one I had to be rushed into hospital for. The third attack I again hit my head and suffered a minor concussion. Other attacks have happened but injuries haven't been quite as bad.

Unfortunately, after 2 and a half years of having seizures, we still haven't found a drug that works for my body so I'm still getting seizures very frequently and are uncontrollable. Due to my epilepsy, I cannot drive and at present, we aren't sure whether I'll ever be able to drive. I will have to go seizure free for 1 year before I can even apply for a provisional licence. 

What I am wanting to raise awareness of is the fact that there isn't just one form of epileptic seizure, in fact, there are over 40 different forms of epileptic seizures, however, a lot of people aren't aware of this. A lot of people when they think of epilepsy think of a motor seizure which affects the muscles of the body. This can cause the muscles to go stiff or to weaken temporarily which can cause shaking of the body - luckily, at present, I have only experienced two of these. 

I am also wanting to raise money for "Epilepsy Action." Epilepsy Action is a charity committed to a better life for everyone affected by epilepsy. They want high quality, accessible epilepsy healthcare services so that people with epilepsy have the support they need to manage their condition. They want wider awareness and understanding of epilepsy so that people living with the condition are treated with fairness and respect. Any donations made no matter how large or small will help to build a brighter future for people living with epilepsy and also contribute to research into new epilepsy drugs.

As a woman of childbearing age, there is a very limited amount of anti-epileptic drugs I can take, as the majority of anti-convulsants cause infertility in women. This is another reason I'm wanting to fundraise for Epilepsy Action so they can start trying to develop new drugs for young women like me that don't cause this side effect. 

Head to there website to find out more about the charity and the work they do for people like me. https://www.epilepsy.org.uk/

About the charity

Epilepsy Action

Verified by JustGiving

RCN 234343
Epilepsy Action is creating a world without limits for everyone affected by epilepsy, connecting people with others, and providing support and information you can trust. We’re calling out the misunderstanding, prejudice and barriers that stop people with epilepsy living their best life.

Donation summary

Total raised
£3,160.18
+ £358.75 Gift Aid
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£3,160.18
Offline donations
£0.00

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