TheSunHasGotHisHatOnHipHipHipHooray ·
27/05/2026 07:44
Does anyone else have this?
I was diagnosed as a young child and it hasn't really got any better!
I'm 51 now and I've never met anyone else with it or even anyone who has heard of it.
The NHS website describes it essentially as a mild irritation but it's debilitating. It also suggests it lessens over the summer as your skin becomes acclimatised. Mine doesn't.
It's not as bad as when I was a child but that ls probably because I'm an adult and avoid being outside altogether if I can help it.
The GP said it's basically an allergy to UV light, which seems to be held up by the fact that, when I was younger, I'd react even in nightclubs or at attractions with UV light. We were asked to leave places when I was a child because it looked to management like I had measles.
Exposure to sun causes a severe stinging nettle type rash on any exposed parts of my skin. Raised white lumps that group together to cause blotchy patches that are intensely itchy and surrounded by redness that are also incredibly painful to touch. I get it on my face and hands still but not as severely as I used to or on less exposed parts of my body. I don't get it so much on my face now but get what I assume is angioderma - swelling on my face that's really unattractive and causes large swollen sagging eye bags essentially that extend half way down my cheeks 😭 Antihistamines can take the edge off the itching but not really the pain and not the reaction in the first place.
I cover myself in factor 70 suncream but can still have reactions in strong sun (like this weekend has been).
Unfortunately, covering up is also hard because I don't tolerate heat very well and don't regulate my body temperature well so I overheat quickly and become ill through that. Using suncream can also have the same effect. It's a pain.
I'm also quite photosensitive generally. I wear sunglasses all the time outdoors unless the sky is dark and overcast with grey clouds. Even a cloudy sky can be too bright and painful!
It's never early occurred to me to go back to the GP about it. When I was a child (late 70s/early 80s) they said there was nothing for it but to stay out of the sun - which is hard to do! Avoiding the middy sun (11am - 5pm) doesn't really help because sun outside that also cases a reaction and being at work makes it difficult too.
It just makes normal life quite hard from light spring through to summer. I have a really shady garden (intentionally) and can sit out under the trees but no one else wants to constantly chase complete shade so it makes normal socialising with others tricky too.
I just wondered if anyone else on here has this or what your symptoms are like because, like I say, I've never met anyone else with it!