Louise Coomber

Type of Porphyria: 
Erythropoietic Protoporphyria (EPP)

I had my first symptoms of EPP at 18 months old but didn't get a diagnosis until the age of 31!  I was repeatedly told by doctors through my teenage years to “just stay out of the sun.” We just don't have widespread knowledge of EPP within our health system in the UK. I eventually became obsessed with finding out what was wrong with me, so I went to my doctors with a stack of information about EPP, and finally found my answers.  It was the most incredible feeling after all those years of feeling different but not knowing why.  Also meeting and talking to other people who have EPP is an incredible feeling. I have never had a reaction in the winter, with the exception of skiing in Italy, which I put down to the intensity of the sun at altitude. I'm lucky in the sense that in England we only have 5-6 months of warm enough weather to affect me. I also have a daughter who is 9 and doesn't have EPP. It is a struggle in the summer.  I have suffered so many feelings of guilt through her life when I have had to say 'Mummy just can't do it.'  We tend to holiday outside of season and mainly take advantage of our beautiful coastline. However, shaking the feeling of guilt that she doesn't get to experience the traditional warm, 'beach holiday'' is a struggle. My family is amazing, and my daughter is really lovely and protective now that she understands my EPP

The toddler years were tougher when they suddenly ran into the sun and I couldn’t follow!  I would say it gets easier in time, and we try to do loads of outdoor activities outside of the summer months.