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
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#Porphyria
Latest posts tagged with #Porphyria on Bluesky
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Posts tagged #Porphyria
I’m taking all of the shady parking spots today. Jfc it’s sunny. Beautiful but not vampire weather, and I’ve got shit to do today. #Porphyria
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Being allergic to the sun is a problem this year. Last year it wasn’t as bad. This year has been bad. I am sitting in my cool room because my head is trying to explode, my GI is trying to 🤮, have hives all over my face (exposed to sun), and vertigo. I need my body to stop it now. #Porphyria
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#ICYMI: watch our all-star panel on #porphyria here liveralliance.org/past-webinars/ today!
Thank you to #GileadSciences and #DiscMedicine for supporting this webinar
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🤝Honored to partner with the United Porphyrias Association to advance education, awareness, and support for patients living with rare porphyrias. Looking forward to fostering a meaningful impact together.
🌍Stay connected: hemehub.org
#RareDisease #UPA #Porphyria #HemOnc #MedEd #Hematology #HemeHub
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Join us this #RareDisease Month for a roundtable webinar on #Porphyria!
We have an amazing panel of experts lined up, bring your questions!
Register today: tinyurl.com/porphyriaweb...
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🎙️ New JIMD Shortcast
Leukodystrophy caused by biallelic HMBS variants behaves very differently from acute intermittent porphyria and does not respond to liver-directed therapies.
🎧 Listen now: open.spotify.com/episode/5qWM...
#RareDisease #Leukodystrophy #Porphyria #MetabolicNeurology #IMD
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of all the white jesus #pederasts & girl child #rapists & repugnicunt donors are inside the #Epstein files, so the government remains closed & everybody is hungry & #COVID will be back soon to wipe out another million because that's the way the white eugenicist RFK Jr. w #porphyria from white
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Nope. This is me in the summer 🫠😅🖤🖤🖤
#porphyria
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Was #KingGeorgeIII the one that went nuts with possibly #Porphyria?
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“ #PeriodicGraphics: #Porphyria and the #vampirism myth” — @cenmag.bsky.social
#Chemistry #Biochemistry #SpookySeason #Vampire
cendigitalmagazine.acs.org/2024/10/24/p...
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Person with face uv goggles, full uv cover for head an mouth. Green uv fabric poncho. A purple agate slice brooche holds things together under the chin. Black belt. Long black skirt. The only thing you can see of her is two long brown braids on either side. A black agate sits on the chest for protection during travel.
About to pick my brother up from the train station.... ugh, the strange looks I get 🙃🥲 #Porphyria
At least I got lace to put over my uv gloves. That's fashion right? 😅😅😅🥲
Why do they not have better UV bicycle friendly stuff.
So looking forward to autumn when I can be almost normal after 10am 😅
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Living with porphyria is like carrying a hidden storm system inside your body. On the surface, things can look calm—your day moving along, routines intact. But then the weather shifts.
medium.com/@limolnar/li...
#porphyria #healthcare #mentalhealth #stress #motivational
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#Porphyria. Get to know this word.
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A Gothic Victorian plague doctor with feathers and an umbrella. Every inch of skin covered. 😅
We have festivals like the renaissance faire here in the Netherlands called #Castlefest2025 that I love to go to. Because of #porphyria I need to plan my costumes to be sun safe haha but I love to dress up! This is what I did this year 😅🖤
Do you go to festivals and dress up?
#WitchSky
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Begining of the more shadowy side of the year! So ready for it 💯🖤😅 #Porphyria
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The PrObLem is that I can't drink the stupid wine because #Porphyria 🙃😭😅
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Happy Summer Solstice everyone. I hope you are able to mark it in any way you can.
The days get shorter from here on out! Which I am very much looking forward to hahaha. This is my Wednesday of the year hahaha
#Witchsky #porphyria #SummerSolstice2025
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So I sunburned my eyes today.
I had to go to physio for my lungs (pulmonary embolisms with long covid get 0 stars lol) I was outsidevat 9am for 10 minutes in 2.4 UV partial clouds.
Ugh #porphyria sucks.
I had no idea those could get sun burned lol I was wearing UV glasses but they were cheap 🙃😅
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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
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Black ⚫️ #Plague coming any day now that Mssr. 🧠 🪱 🪱 w #porphyria from white inbreeding runnin 🏃♀️ ur health #misinformation system & the drug companies will make a killing, just as they did on COVID. We still have the Long #COVID in our lungs 🫁 & the niggardly whites who run #SSDI just denied me again
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Porphyria refers to a group of rare inherited disorders caused by problems in the production of heme, leading to a buildup of porphyrins or their precursors in the body
May 18 is Global #Porphyria Day porphyriafoundation.org
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
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It's funny. It couldn't have been any other way.
My busy season is when others slow down. The season of darkness when I have the most spoons to give. And the busy season of others is when I have less to give.
I couldn't have been anything BUT a shadow worker.
#Witchsky #porphyria #CauseAndEffect
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New in #JIMDReports
Self-Reported Liver Disease and the Burden of Erythropoietic Protoporphyria
Hetanshi Naik, Kristen Wheeden, Hilary Colwell, Susan Mathias, Chelsea (Mencio) Norregaard, PhD, MPH, Melanie Chin, William Savage, Manisha Balwani, MD, MS, FACMG
doi.org/10.1002/jmd2... #porphyria
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Glimpse into #Porphyria life!
Gotta go pick my kid up from school. Thankful most of the parents are pretty chill 😅🥲🙃
I got my voodoo lilly and fly pins to keep me company lol it's the little things 😅🙃
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There is SUCH a need for bicycle friendly upf+50 clothing 😭😅 #porphyria #raredisease #NoHatsInTheWind #sunallergy #PMLE
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Thank all that is unholy for the romantic and vampiric #goth s that have a wonderful #porphyria friendly aesthetic.
I would never survive summer without you. 🖤
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The Spring Equinox is always the hardest time of the year for someone with a sun allergy. Back into the shadow for me 🙃
#porphyria
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