Welcome to our first British Porphyria Association blog!
Chances are, if you are reading this post, you or someone you know, has porphyria…welcome to the community. My name is Sophia and I have EPP. The BPA website helped me to diagnose my condition at the age of 24. Had it not been for the fantastic support and information at the BPA, I would still be calling my condition an ‘allergy’ to the sun!
Although the symptoms of the porphyrias are wide ranging, those of us diagnosed (or yet to be) with porphyria, experience similar mental health issues of isolation, lack of control and hopelessness to name a few; not all that far from symptoms of depression. As a child, I learnt to become an expert weather predictor, skilled in quickly assessing where the sun sat in the sky and calculating where shade would fall during summer months. I faced anxiety and worry, often keeping my condition from friends due to feeling different. With these experiences in mind, I am passionate about helping young people with porphyria dispel the stigma around this condition.
The BPA community make it our mission to encourage each other to face porphyria with a positive attitude, often pushing the boundaries of the condition (safely) to enjoy life with as few limitations as possible. One of our BPA members, Antony, who has EPP is a self-proclaimed dare devil who loves the outdoors. Antony has recently embarked on a gap year style tour around Malaysia, Borneo and Western Australia. I know! Impressive right?!
With this mindset at the heart of our charity, this blog aims to be a source of community for all the porphyrias. Our blog will provide you with fun and useful tips and advice on living with your condition, as well as focusing on the mental and emotional wellbeing of life with porphyria.