As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP on the blog.
–
My name is Victoria; I am 26 years old and live in England. I was diagnosed with EPP at the age of 24. I fought for many years to get people to listen to me and understand EPP. I want to help raise awareness for this condition and also encourage those who suffer in silence to fight to get someone to listen to them. This is part of my story.
My childhood in the Spring/Summer was not a happy one. School was awful for me. When I had bad reactions I never knew what to do and I felt that there was no one to turn to as no one would listen to me.
Every time we went away on holiday I ended up in hospital with horrendous pain. As a child I had a really bad reaction: my face swelled so much that my lip ended up pushing up my nose (I now have a line where my nose was pushed up), my hands had swollen so much that I couldn’t see my knuckles and my feet swelled up, forcing me to use a wheelchair to go to the toilet. It was awful. Despite all this, the doctors thought that it was all caused by me putting water on myself. I knew this was wrong: I had exposed myself to water my entire life. But, I had a diagnosis and thus no further investigations were made.
After coming out of hospital, things started to settle down again. My skin went all scabby, but when I went to school I was teased, called monkey, gremlin, alien etc.
When I had the reactions I used to hang out of the window at night to try and cool myself down, I used to put water on myself including cordial or whatever was around to relieve the pain. I remember sometimes wetting myself with the pain and I have even hallucinated because of the pain.
My mum said that she tried to get doctors to find out what was wrong with me but they simple said that I was making it up; I was attention seeking, ‘neurotic’ and that it was all in my mind. I was put on anti depressants to cope.
It wasn’t until I was 16 that slight movements in the doctors’ thinking started to change. I ended up in hospital yet again after being at army cadet camp (rushed in by ambulance following a reaction). They said that I was allergic to the sun and I must be phototoxic. Sadly, the diagnosis was left at that with no further tests to investigate.
Shortly after I contacted my doctor who told me over the phone that I had phototoxic skin and there was nothing else they could do. I knew deep down that there was something else.
After the initial phototoxic diagnoses, each time I saw a new doctor I tried to see if they would listen to me. Finally, eight years later, after another attack (and being subsequently told to “avoid the sun” by one doctor), I saw a new doctor. She reviewed my notes and confirmed there was a problem. She referred me to a dermatologist.
Initially the dermatologist couldn’t make sense of my symptoms when I explained them, but it triggered her memory on something she had read. She took some blood, sent it away and, finally, I was diagnosed with EPP at the age of 24.
Photo – Victoria in her sun protective clothing, courtesy of Mansfield Chad
