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Stephanie Sinclair avatar
Stephanie Sinclair

Steph puts her severe fear of heights to one side to jump out of a plane on 09/08/14!!!

I want to raise awareness and money of IIH for IIH UK because I bet you don't know what IIH even stands for!

210 %
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  • Event: tandem skydive, 09 Aug 2014

IIH UK

We raise the profile of IIH to Improve the lives of sufferers

Charity Registration No. 1143522

Story

Idiopathic Intracranial Hypertension - I know it's a bit of a mouthful!

IIH occurs when a person's skull has too much intracranial pressure - excessive amounts of spinal fluid build up around the brain. The symptoms can vary from headaches (excruciatingly painful), nausea, tinnitus and dizziness, to loss of eyesight. 

It affects 20-30k of people in the UK (800 children) - mainly young female adults, however 25% of male sufferers do go blind.

I suffered with chronic headaches, vomiting and lethargy for a year before a routine eye test raised an alarm. After a sequence of tests,  I was informed that I had started to lose my eyesight! My optic discs were swollen and my brain was literally being squashed by spinal fluid. I had IIH!

Due to the quick reaction of some AMAZING doctors, I was able to start receiving treatment within weeks of being diagnosed. I had a lumbar puncture (to remove the excess fluid) and was prescribed medication for a short time, which all helped to relieve my symptoms, including restoring my vision. Unfortunately, that is not the end of the story for IIH sufferers... there is no cure. I have had two relapses since my diagnosis, but compared to a lot of IIH sufferers, I am one of the lucky ones.

Medication has worked quite well for me and I am mostly able to manage this chronic condition. My GP has absolutely no clue about my condition, but I did have the benefit of taking advantage of the private healthcare package that my employer provided, which has allowed me to quickly have access to experts in this field.

For those who don't have access to neurologists, as easily as I did, they turn to IIH UK. This small UK organisation provides IIH sufferers and their loved ones with answers that they will struggle to get from the average medical professional and aims to educate the public about this condition.

I doubt that I have been very good at explaining what IIH is and the limited treatments available, so please take a look at the video below.

The fact that I have chosen to jump out of a plane, when I suffer with vertigo and am terrified of heights, should really help emphasise just how much the current lack of awareness around IIH frustrates me. I'm pretty sure that I will probably cry before even putting my gear on and I will scream the whole way down, but I'm determined to get the word out there and raise some money for this amazing charity that I only found whilst Googling my condition - it helped me to find the answers that I was looking for :)

PLEASE dig deep!!! I am in no way judging other charities - most of you know that I've raised money for the big charities before, but this small charity really needs help. My £500 target will really make a significant difference, so please donate and I promise to post my embarrassing video afterwards.

Thanks so much for taking the time out to read this. It would be great if you could donate, but it's already a start that I have spread the word about IIH.

Steph

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