Simon Robinson

Kayaking for CSF Leaks

Fundraising for CSF Leak Association - The Cerebrospinal Fluid Leak Charity
£907
raised of £250 target
3-day Thames Kayaking Expedition, 24 June 2022
CSF leaks result in a loss of fluid that surrounds the brain resulting in crippling pain worsening when upright. Crucially it's treatable but often misdiagnosed. For more information visit csfleak.uk

Story

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A family member has recently been diagnosed with having a cerebrospinal fluid leak.  This is an incredibly debilitating problem where the fluid surrounding the brain and spine is being lost; similar to a slow puncture.

Sufferers of this problem have to lie down and cannot sit or stand due to the stress it causes inside the head where the brain has contact with the inside of the head where it normally is protected with the fluid.  Not lying down causes many differing unpleasant symptoms.

CSF Leaks can present in anyone, seemingly randomly but to a very small number of people.  It can happen as a result of epidural or lumbar punctures that cause a hole in the CSF membrane that doesn't ever heal.  

My brother and I would appreciate your support while we kayak 60 miles in 3 days from Reading to Teddington - this will be a hard going trip as usual kayaking speed is about 3 mile an hour; so quite likely will be paddling for over 7 hours each day!  (We start on June 24th eek!)

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About the campaign

CSF leaks result in a loss of fluid that surrounds the brain resulting in crippling pain worsening when upright. Crucially it's treatable but often misdiagnosed. For more information visit csfleak.uk

About the charity

We’re a UK charity dedicated to CSF Leak sufferers we support and empower them to access specialised care. We co-ordinate and fund research, our goal, to ensure swift, accurate diagnosis and effective treatment of all CSF leaks. Together we can stop CSF Leaks, prevent disability and transform lives.

Donation summary

Total raised
£906.95
+ £171.25 Gift Aid
Online donations
£906.95
Offline donations
£0.00

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