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.”