Edward Boyle

Binnsey's Big 3

Fundraising for The British Porphyria Association
£1,581
raised of £1,000 target
Donations cannot currently be made to this page
The Big 3, 6 March 2017

Story

This year I am going to drag my slightly overweight and out of shape and worn out body around 3 big ones!

A marathon, a 3.8K open water swim and a Half Iron-man Triathlon

I am doing this to keep challenging myself and if I can raise some money and awareness for the British Porphyria Association charity.

You can be forgiven if you have never heard of Porphyria.  It is a complex and rare condition.  The most recognised case is King George III, who was suspected to suffer from 1 of the 7 variations of the condition.

Whether the retrospective diagnosis is correct in the case of the King for people with the condition today the symptoms can be severe and debilitating with no conclusive cure as yet. There tends to have been a general lack of awareness and understanding from some of the medical profession and the wider public. This is on the decrease due to more training, modern diagnostic techniques and the diligent way the BPA works towards raising awareness of the condition, but there is still a long way to go.

My sister Eleanor has Acute Intermittent Porphyria, the most life threatening form of the condition if not treated during an attack and is the latest generation of my family to be touched by the condition.  On an almost daily basis Eleanor has to cope with; constant pain, nausea, and unremitting fatigue.  With increasing frequency these symptoms amplify causing Eleanor to be admitted to intensive or acute care wards in hospital with terminally and seriously ill patients in oncology wards- the nearest similarity of the illness and because of the need to be under the care of a Haematologist.  In the long term, the prognosis could be irreversible liver and neurological damage. 

If this wasn't hard enough the disease can lay undetected for many years which is what happened to my Aunt, who died, and my sister. Fortunately, due to DNA testing, families with a history of the condition can now identify if their children have inherited the condition.

For more info click the BPA link above or here for a wiki explanation

So to help future generations, like my niece, and to keep me on track for these events, please dig deep and chuck me a few quid.

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About the charity

It aims to improve the understanding of Porphyria, by reaching out to patients, relatives, doctors and medical staff, etc. Early diagnosis is vital if we are to improve the quality of life for those affected by it. It also provides a social support system for sufferers and their families

Donation summary

Total raised
£1,581.00
+ £299.25 Gift Aid
Online donations
£1,281.00
Offline donations
£300.00

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