#pmle

Robin

@incompletecricket.bsky.social

2 weeks ago

The spring
Such a history of burning
Fingers on the heavy drapes
#Timid, hopeful, dreading
All at once
Slowly it begins
Light therapy

#porphyria #vss365 #PMLE

Melissa Love

@gnome-and-tonic.bsky.social

9 months ago

I can't run in the meadows with you. I can't take you on picnics in the sun. I can't take you to play dates with friends in the park, giving out watermelon and reminding you to drink water. I'm stuck behind blackout curtains. But I'm hoping I can share the warm moonlight with you. #porphyria #pmle

Ludibriumventis

@ludibriumventis.bsky.social

9 months ago

Gah, I didn't wear gloves when we went out, earlier, and even though it was overcast, I got SUNNED!

The backs of my hands are itchy and ugly-looking, now.

#PMLE

Obi

@theysayjasmine.bsky.social

10 months ago

bought a cute UV umbrella, colorful sun protective sleeves and some SPF hair mist.

I was out in the sun for the first time since I cut my hair and broke out in the back of my head. I always had my head/neck covered with locs

But I am determined to be outside this summer 😭

#sunallergy #PMLE

Melissa Love

@gnome-and-tonic.bsky.social

11 months ago

There is SUCH a need for bicycle friendly upf+50 clothing 😭😅 #porphyria #raredisease #NoHatsInTheWind #sunallergy #PMLE