My mum and I were diagnosed with EPP in 1972 – 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.
I am very fortunate, after nearly 37 years of working, to be able to take a 12-month sabbatical (or grown-up gap year!) from my role in the Civil Service. But I was keen to take up some voluntary work and whilst wondering what route this would take (EPP limiting anything that may involve being outside), the law of serendipity kicked in and a role was advertised at the BPA at the end of 2022 – I knew that this was for me as it promised the opportunity to use my existing skill set in full! After a quick update of my CV, I sent it off and asked if a volunteer for the role could be considered, which it could, and I have joined the BPA team supporting Liz & Sue with event planning and other bits and pieces.
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.