X-Linked Protoporphyria (XLP)
I was born in Sweden 40 years ago in the southern part. I have no recollection of having any problems being in the sun when I was a child. In fact, we spent a big part of the year in the Mediterranean sun. . And I would go and stay with my grandparents who lived in the Swedish highlands where it is micro climate and can get extremely hot. At the time when I grew up, there was no awareness of how dangerous the sun could be, and we were always outside with no protection. When I was a teenager, everyone was competing to be as brown as possible, so me and my friends lived in the sunbeds and put oil when we were sunbathing.
I can’t recall what age I was when I got sick the first time from being in the sun. But i do remember what happened I just don’t know how old I was. I was sunbathing on a roof terrace the reflections must have been quite strong. I remember that it was strong and all of a sudden, I started feeling ill and nauseous. I went it to lie down for a bit. I started to get pain in my hands and feet and after a couple of hours they got swollen - they were looking like elephant feet and hands. My mum, being of a generation not believing in doctors, did not take much notice all though I was in extreme pain. It went away after a day or two . I have only had that experience where it swells maybe one more time in my life. Thinking back, I think I was 13-14 years old when it happened for the first time, but I am not sure
I would go on trips to sunny countries with my friends, and I could be with them on the beach and outside for days. But once in a while, all of a sudden, I would get this pain in my hands and feet and I would have to sit in the shade and wrap my hands in wet towels. They all thought I was weird. I would go to doctors to explain what had happened, but they would not take any notice. I guess it doesn’t help that I have olive skin and would tan easily. I think in my life I have been to 20 doctors all of the world and no one had taking any interest. Every time it happened, I would feel ok if I stayed in the shade, but the minute I even put my hand out in the sun it would feel like I was on fire. Even sunblock of 50 would not help just made it feel worse. So, I had to learn to live with it and I kind of know when it’s about to happen. These days I am always in the shade or I wear hats, but sometimes it’s hard to avoid the sun.
The strange thing for me is that it seems that some parts of my life I had no problems. I lived in Cyprus for a year in the summer. It could get 50 degrees Celsius, but I don’t think I had any problems. I worked on a cruise and same thing no problems at all. But then it’s been other times when I gone to Greece and after a week I am in so much pain and I am running from one spot in the shade to another. And something in Thailand after 2 weeks I was so ill I was lying in the bungalow shaking. I often googled the info but never really found anything, so I just had to try to avoid the sun and be prepared that it could happen. I had a baby boy 3 years ago, and when he was about 1 year, he seemed to have similar reactions to the sun as I had. Thanks to some strange circumstances where he started to go to a nursery , where there was a teacher that had children with EPP herself ( there are only 66 known Cases in Sweden) we were able to both get diagnosed, and it turned out that we both have x linked EPP .