Like most people, I had never heard of Porphyria until my recent diagnosis. With its extremely low prevalence worldwide, this is not surprising and can make the diagnosis process a lengthy, confusing and stressful one. It is a rare, hereditary disease in which an abnormal metabolism of the blood pigment, haemoglobin, results in the accumulation of porphyrins. These become toxic and affect either the nervous system (in the form of acute attacks causing both severe physical pain and mental implications) or the skin, or both.

Both the symptoms and treatment are specialised to each sufferer and vary considerably meaning it is often mistaken for other conditions. Having been through this, it is my aim to raise general and professional awareness and understanding of Porphyria so that this is not the norm in the future. 

The British Porphyria Association (BPA) was set up by a group of patients who had experienced isolation from their diagnosis and a general lack of understanding and assistance available. The charity is instrumental in leading the research and understanding of Porphyria which is importantly a cornerstone for improving the diagnosis process. Although there is currently no cure for the condition, medical advancements are happening at an impressively fast rate and these need to be funded. 

To raise awareness and medical understanding and development of the condition, I’m running in the Great South Run with all funds raised being donated to the BPA. I know there is no shortage of charities seeking worthy donations but if you would like to support the BPA, any amount would be hugely appreciated. Regardless, I hope that by reading this you have learned something new.

Thank you.