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I have an ultra rare disease called Erythropoietic Protoporphyria, which causes me to suffer from extreme sensitivity to sunlight, symptoms include severe burning pain, hallucinations (because of the pain), swelling and blistering. 

It is currently believed that a severely faulty gene (the ferrochelatase or FECH gene), paired with a less severely affected variant of the gene can cause EPP. My body also rejects iron and taking it orally will cause further complications, it is a blood disease and the issue is with blue light and not UV. 

As it is so rare I wasn't diagnosed until I was 24, this was after many years of fighting to get doctors to believe I was having allergic reactions with the sunlight, they thought I was self harming or making it up ( this was usally the case when I just had the sever pain prior to swelling and blistering). Since being diagnosed I offer full support to fellow sufferers, parents and also medical professionals, I also volunteer for the British Porphyria Association.

There are 8 different porphyrias and mine is the most rare although all are equally as hard in their own way. 

I am currently training for the Yorkshire Three Peaks challenge to raise money for the BPA, as a small charity they are heavily reliant on donations and fundraising to enable them to keep supporting people with porphyria. Donating to the BPA enables them to continue doing the work that they do for me and so many others.

This trek will take me completely out of my comfort zone as the weather is getting warmer so I am anxious but I know I have to challenge myself for all those who are also affected, I will be pushing boundaries but also raising money to support this valuable charity, there isn't currently a cure or anything to help me with this disease, however there are clinical trials currently taking place which will hopefully enabe me to live a more normal life, wear shorts, have bare arms and own/wear flip flops, also go on holiday abroad which I haven't done yet, if you would like to know more about my condition, then this link will help http://porphyria.org.uk/the-eight-porphyrias/#1490723539981-0cfb737b-01c7c2cf-8651

 Please note that whilst I intend to fully complete all 3 peaks there maybe health restrictions which may cause me stop, I hope this isn't the case so please bear this in mind when donating, thank you