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Greg Hayes avatar
Greg Hayes

Greg's Bupa London 10,000 2014 page

doing a little run for Histiocytosis UK because I have Haemophagocytic lymphohistiocytosis (HLH).

145 %
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  • Event: Bupa London 10,000 2014, 25 May 2014

Histiocytosis UK

We fund research & information support to improve the lives of patients & families

Story

Around April last year I got ill with fevers above 40 degrees, uncontrollable shaking and passing out. After two weeks of being at home I went to get some blood tests done and then was told I needed to go straight to hospital.

I went to Whipps Cross Hospital and later on transferred to Barts, including a stint in intensive care. I was finally diagnosed with Haemophagocytic Lymphohistoctosis (HLH) brought on by the Epstein-Barr Virus (EBV).

HLH is a rare blood disorder mostly found in young children that affects immunity. It makes you have an over active immune system so when you're ill it doesn't get rid of your illness but attacks your body instead. 

It's treated a lot like Cancer and since being diagnosed I've received different treatments and therapies. Nearly a year later I'm slowly getting over the adverse effects of them, however doctors still haven't ruled out a bone marrow transplant.

I want to do this run because HLH is a rare disease that doesn't get as much recognition as other blood diseases. Speaking to a lot of doctors, nurses and GPs in my time in and out of hospital I found they hadn't even heard of it either and in my specific case my results had to be discussed with specialists around the world for their input on what the next stage in my treatment should be.

Any donation you have would be greatly appreciated because a lot more research is needed into this blood disease. Unlike a lot of other blood diseases funding for this is very limited.

My URL pretty much sums up how I feel about it.

Thank you.


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