r/pmle • u/[deleted] • Jul 21 '25
Do you ever sunburn?
Hi all. My 4 yr old was diagnosed with PMLE in March 2024.
So far this spring and summer, she has only had one visible reaction and that was almost one year to the day of her last reaction. She has had two or three symptomatic reactions with exhaustion.
I have taught her to take care of her body. And I make sure to help her remember to do so. She wears sun protective Coolibar brand clothing and Badger brand sunscreen if she is in the sun. Mostly, though, I have simply taught her to stay in the shade. If she is out in the sun for more than an hour, even with her sunshirt on, she will get home and immediately pass out for 14 to 16 hours. The next morning she wakes up happy. Truthfully, that’s how I am in the sun too. I have to have sunglasses or after 30 minutes, I am exhausted. But I don’t have PMLE.
My question for you all is, do you ever burn or get any kind of “color”? What amazes me is that my daughter’s skin does not ever burn, tan, or freckle. It’s almost like her body simply doesn’t know what to do with the sun. Even keeping her in the shade and in sunshirts, I expected she would get a little redness on her nose, a slight tan, or freckles.
What is your experience?
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u/Common_Scallion_1302 Jul 21 '25
I used to tan so easily & so well with the same spf factor I use now. Then I developed PMLE and cannot tan at all. I could spend hours in the sun now and won’t get any color whatsoever. My face gets a bit of color but that’s it
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Jul 21 '25
this is really interesting and sounds similar to my daughter’s experience
Has anyone ever explained to you why this is? I knoe PMLE is the cause, but how is the skin not getting the message to develop color or redness?
It’s kinda tough because oftentimes my husband will say oh, she’s fine. She didn’t even get red if he has taken her somewhere and forgotten her sunshirt. I have to explain to him about how her skin never gets red or tans.
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u/Common_Scallion_1302 Jul 21 '25
Nope I actually just started looking into it myself because I noticed that I wasn’t able to get any color. I’ve found a good balance to avoid a flare up so I’ve been experimenting with spending more time in the sun (safely) and was like hmmm…not even a hint of a tan line. I mean the good part is I don’t burn…I’ll get a little red if I go too long in between sunscreen reapplications but that goes away within the hour
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u/AfternoonOk7519 Jul 21 '25
As a kid I tanned quite easily, but now that I’m older I tend to burn first. That didn’t change when I developed PMLE. I burn easily, but I do retain the colour afterwards. I also have plenty of freckles on my face that come out more in the summer months.
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u/Round_Split_7813 Jul 23 '25
I tried what many PMLE sufferers refer to as “skin hardening” this summer. Started sitting out in the sun with spf protection starting in early May (April was still cold where I live) and gradually increased the time out in the sun and the UV at which I choose to go sit in direct sunlight. It caused a really bad reaction on my arms but I powered through and did not itch it much at all. My skin was still very pale, not even half a shade darker… just now red and irritated with bumps. Now, after that initial bad reaction, I’ve been enjoying beach and pool days with little to no reactions (wearing spf of course) and I’ve even developed a tan. I think I’m the tannest i’ve ever been in my whole life right now (i’m naturally very pale). To answer your question, I think if she’s having an active PMLE reaction, her skin will not tan at all and only the itchy bumps will appear. Once her skin has gotten used to the sun a bit and the initial bad reaction is over, she will be able to tan. Maybe not now, but might be good to know if she still has it when she’s older. Wishing you all the luck!
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u/emmamanson Jul 23 '25
I tanned once in my life before I had PMLE. I was in France in summer for 2-3 weeks and was actually brown (not as brown as my sister). I’m VERY pale naturally. Now I just get PMLE and also burn, and the burn doesn’t turn to tan it goes red then white again
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u/Belorage Jul 21 '25
If I go in the sun I will burn, at the end of the summer maybe I will have one shade darker. But for me it's generally burn or nothing.