by Sophia Speakman, EPP patient and BPA volunteer
Living with Porphyria can often feel isolating. As a rare condition, it is frequently misunderstood, difficult to explain, and invisible to those around us. Many people spend years managing symptoms, navigating healthcare systems, and adapting their lives without ever meeting someone else who truly understands what they are going through.
For some, that moment of connection happens for the first time at a BPA patient event.
At the BPA Patient Day in Stratford, London, we were moved by the experiences of several first-time attendees. People who had never met another person living with Porphyria before, and who described just how powerful that experience was.
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Emma attended the day with her daughter Grace, who is 11 and was diagnosed with Erythropoietic Protoporphyria (EPP) in 2024, after years of unexplained illness each summer.
“It was an emotional experience for Grace to meet fellow EPP patients for the first time. It validated her experiences and symptoms. She could share ways of coping and stories without having to explain herself. They just got it, as she would say.”
For Grace, this moment of recognition mattered deeply. Like many children with rare conditions, she had often felt alone. Meeting others who understood her reality helped change that. “She really felt like she’s not alone,” Emma told us.
Andy, who also lives with EPP, attended the Stratford event with his husband. For them, the day was equally meaningful.
“At the event I met other people who have EPP. For me and my husband this was a very emotional time. To meet people who understood what it meant to have EPP and how it affected me was something I had dreamt about.”
Beyond the emotional impact, Andy also highlighted the practical value of connecting with others. “It was great to connect, share stories and get tips on how to manage my condition better” he added.
These moments capture something at the heart of the BPA community. Patient days are not just about information sharing, although learning from clinicians, researchers and lived experience is invaluable. They are about belonging, validation, and the relief of not having to explain or justify your experience. For many people affected by porphyria, meeting others who “get it” can be life changing. It can reduce feelings of isolation, build confidence, and remind people that they are part of a wider community that understands and supports them.
Get involved
If you or someone you care for is affected by Porphyria, the British Porphyria Association is here to support you. By joining the BPA, attending events, or connecting with others through our community, you can find understanding, shared experience and trusted information.
