Fund Afamelanotide on the NHS for all Erythropoietic Protoporphyria patients.
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James my son has suffered from Erythropoietic Protoporphyria (EPP) since birth. This condition is an allergy to the sun and any visual light we see. This condition makes James burn inside out. The amount of light that gets onto his skin especially sunlight reacts with his blood which makes it boil inside like a kettle boiling and he can be in severe pain within a matter of minutes.
This can last for a week, which results in him being in a blacked out room until his pain, swelling and burning has subsided.
Afamelanotide is a drug which is implanted into the skin of EPP sufferers which allows them to go into the sunlight and to be able to do things "normal" people can do. This drug has been approved by other countries and EPP sufferers are enjoying a more active lifestyle going out in the sun.
James at the minute has to be totally covered up in the sun from head to toe. He finds it hard to go out in the hot summer months fully covered as people stare at him, make comments about how he's dressed which upsets him greatly.
I have had to fight for any support for James all his life even had a two year fight with the GP to get him referred for testing at the age of two I thought I would start this new fight early. He is 15 in December and won't be able to receive this implant until he's 18 but if this can get to government and approved all other EPP sufferers can start to have a "normal" life and hopefully on his 18th birthday James will be given the extra special present in the shape of the implant.
Thank you for reading this and thank you in advance for signing this petition.
Claire James's mum.
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