Team

Victoria was first diagnosed with erythropoietic protoporphyria (EPP) at the age of 24, after several years of fighting for a diagnosis with GPs, during which time she experienced severe episodes of intense pain, swelling, blistering, and multiple hospital stays. After attending a conference and suspecting a diagnosis of porphyria, she was eventually referred to the dermatology department at her local hospital where the specialist completed the required tests for EPP and confirmed the diagnosis.

Since diagnosis, Victoria works with medical professionals to help raise awareness and runs a support group on Facebook for fellow sufferers and their families.

Having been a member of the BPA for 15 years, Victoria assists with the running of events, has recently became a trustee, and in 2024 accepted the post of secretary.

Victoria aims to live life the best that she can, especially during the hot months. She has said that she doesn’t want EPP to control her and has worked to raise funds for the charity. A few years ago she took part in the Yorkshire Three Peaks Challenge, and whilst she only managed to complete two out of three peaks due to reactions, she feels that it was two more than she did before and remains undefeated – there’s always next time!

“I have vowed to do my best to support those who are affected by EPP, I don’t want another young person to wait so long for diagnosis and I want others to know that they don’t suffer alone, the BPA are here for anyone who is affected by either type of porphyria and we are constantly developing how we can help the best that we can. Having qualified in customer service NVQ level 3, an advanced diploma in advertising, and previous experience of working with young people, I feel I can use my skills within the charity to help to carry on bringing hope for all who are affected”.

Helping the British Porphyria Association spread awareness, advocate and bring together porphyria patients is a passion of mine. When we found out both of our children had erythropoietic proto porphyria, the British Porphyria Association were a huge source or information and comfort. It’s important to me that I can now help others in the same situation

Georgia joined the BPA as an administrative assistant in 2023 and has recently focused more of her efforts on fundraising and communications, becoming a valued Fundraising and Coomunications Officer in 2024.

Georgia does not have porphyria but lives with energy-limiting chronic illness and is passionate about providing high-quality health information to all those living with long term conditions. She has a background in health information, digital communications, and project management, as well as copywriting and translation. She enjoys the wide variety of tasks she is able to contribute to at the BPA, including social media content creation, fundraising, and designing promotional materials.

After volunteering with the BPA for around a year, Claire took on the very important role of Treasurer for the BPA. Claire is responsible for the financial aspects of the charity management and has become an instrumental part of the BPA team.

Claire and her mum were diagnosed with EPP in 1972 and Claire writes about her story below:

“We were the first known cases in East Anglia. At that time, such was the limited understanding of the condition that we were under the care of a dermatological consultant at the Norfolk & Norwich hospital, and were regularly called upon to share our experience of our condition at medical conferences. For a few years in the mid-1970s to the early 1980s, we were prescribed huge beta carotene capsules, which worked, and we both were able to lead a “normal” life being able to tolerate long periods of sun exposure and made it through the long hot summer of 1976. 

Over the years I have become used to not only to the isolation that EPP brings, but the lack of understanding of the condition by any non-sufferers. I found myself quietly contemplating this last summer, when wondering just how to answer the ice-breaker question of, “What’s your favourite thing to do on sunny afternoon?” during a meeting run by my department’s Diversity, Inclusion & Belonging team.

Having been a member of the BPA for several years, I feel that in some small way the opportunity that this role brings may not only help others with EPP but perhaps also help to communicate the message to the big wide world that there are people who physically cannot go outside on a hot sunny afternoon, as opposed to not wanting to go outside.”