The Graham Hughes International Charity for Hughes(Antiphospholipid) Syndrome
Rupert Harwood

Rupert Harwood

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  • £200 Target
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  • My Story

In 2015 I was as far as I know pretty much 100% healthy. Then I developed mild tinnitus which during 2016 became severe multi-tone tinnitus (with 8 plus loud noises screeching, roaring and whistling in my head). Then as winter turned to summer my eyes joined in the "fun", with visual snow, blurred double vision, bizarre clouds of colour, flashing lights, after images, and shimmering. Lying in bed at night there was no longer any possibility of quiet or darkness. It felt like being slowly lowered into hell.

At least my body was healthy. That is until a night in January 2017 when I woke up to find that my fingers had swollen, my hands had turned red and over the next few weeks I developed joint and muscle pains and livedo reticularis (purple-red lacey pattern), raynaud's, constant headaches and cognitive problems.

Getting a  diagnosis has been a marathon (unfortunately not sponsored!). Ive had to keep going private to move things forward and the GPs have been dismissive and generally unhelpful. When I turned up with livedo, the first doctor said it was just a reaction to teh cold and the second that it was just a reaction to the heat! But I wont vent too much about that here! I think I now have a good consultant,

In the last few months I have been diagnosed with several autoimmune disorders, and assorted other conditions, and am being investigated for Hughes Syndrome and scleroderma. 

The Hughes syndrome forum has been very helpful and supportive and I would like to try and raise a bit of money for them, hopefully to in part go towards efforts to improve the time it takes to get a diagnosis.

I cant do running which I use to enjoy (on account of recently diagnosed arthritis) and so thought would organise an archery comeptition. There wil be 20 shots at apples and sponsors can decide how much they pay for each arrow that the person they are sponsoring hits. So if you sponsor £1 per arrow and (in the extremely unlikely event that they hit 20 out of 20 apples) then you would pay £20. 

 

The Graham Hughes International Charity for Hughes(Antiphospholipid) Syndrome

The Graham Hughes International Charity for Hughes(Antiphospholipid) Syndrome

The Graham Hughes International Charity For Hughes (Antiphospholipid) Syndrome - GHIC, is a global charity that: improves and provides education raises awareness about Hughes Syndrome supports all those affected by the condition Hughes Syndrome can be a life threatening autoimmune disease, that makes the blood "sticky" causing a risk ... Read More