Erythropoietic Porphyria (EPP) is a cutaneous (skin) porphyria that results in the patient feeling like their skin is burning/very irritated when exposed to bright/intense light although mostly with no visible reaction. It is a condition that my wife, Kari, has had to contend with her whole life and came with being teased as a child due to the invisible nature of this condition. It has unfortunately affected many holidays and school trips as after being outside for a few days her hands and feet start to feel like they're burning (and on a few occasions her arms have been affected as well). There have been no treatments available with the only relief being to use ice packs constantly for hours as she waits for the attack to lessen often being unable to go outside for several days thereafter without severe pain.

Lately I've been seeing many social media campaigns to cycle 100km this month for charity, often to get something in return (e.g. a cycling top for raising £300 etc.), and it got me thinking... what can I do? I don't want anything in return, the thrill of riding will be enough. Unfortunately I don't have a bike of my own yet, but Kari has one. So, because I love cycling and love my wife, the wheels were in motion...

Combining all these thoughts, I settled on this idea of a "proxy pedal". It will be Kari's bike, and she'll be powering me through with support in spirit (as well as allowing me to borrow the bike haha), but it will be my legs taking the pasting.

The challenge is 100km  (at a minimum) in the 30 days of April. I am going to ride it even if this doesn't speed on, but would really appreciate any monetary support you can give to the charity combating this condition in our new home country - the British Porphyria Association (BPA). The BPA is a charity which provides support, education and research to those with/or affected in some way by porphyria. Their primary aim is to support and educate patients, relatives and medical professionals about the porphyrias, so as to improve the lives of those living with the effects of the conditions. Additionally, they aim to promote research into this group of rare conditions. They also have a light protection fund for donations towards funds for light protection objects for those with skin porphyrias like Kari has. Objects such as special window films, clothing and sunscreen have been developed to help block visible light.

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