In recognition of #GPD2024 , we went #PurpleForPorphyria to show our support for the acute hepatic #porphyria (AHP) community. We also had the opportunity to hear from a patient living with AHP, advocacy leaders and a physician expert and feel #AlnylamProud to stand by their side.

Porphyria

40/ Porphyria Cutanea Tarda 🌞: Blistering photosensitivity with hyperpigmentation and hypertrichosis, often on sun-exposed areas.

Porphyria!

There are at least 8 types

Mutations in long named enzymes (the all sound the same) involved in heme synthesis that all sound the same.

Read about it and consider in differential for difficult cases.

Not worth memorizing for boards and take the 2 question hit.

« De nos jours, les gens ont besoin d’une bonne secousse pour comprendre leurs erreurs, leurs péchés, pour se repentir et s’humilier. » (Moniale Porphyria)

« Aujourd’hui, les gens ne se repentent pas de leurs péchés ou de leurs erreurs, parce qu’ils ne veulent pas s’humilier. Ils pensent que l’humilité signifie l’humiliation de leur personnalité. » (Moniale Porphyria)

« Dieu ne regarde pas le visage, Il n’aime pas certaines personnes plus et d’autres moins, Il nous aime tous de la même façon. » (Moniale Porphyria)

HEMA: HEME SYNTHESIS 🩸

Must know:
Enzymes
Product
Porphyria
Location

drive.google.com/file/d/1jyUPMB…

#ChewyMDNotes #MTLEWallNotes

Acute intermittent porphyria has many symptoms, but acute abdominal pain is the most common

Ariel PORPHYRIA -BLUE BLOOD DISEASE-

The reference to blue blood being different from red blooded humans is clinical fact that royal blood (a bluish purple) is reptilian that doesn't coagulate should they get cut, unless they consume red (human) blood on a regular basis. And even

Join us June 7th at 7:30am CST as we discuss #Porphyria with Dr. Karl Anderson, MD, FACP.

Dr. Anderson is globally recognized as a top porphyria expert. He leads the UTMB Porphyria Center and actively contributes to the porphyria community through clinical studies & resources

Cardinal Pierbattista Pizzaballa visits Archbishop Alexios of Tiberius at St. Porphyria’s Church of Gaza. This is the first time the Cardinal was able to enter the besieged Strip to visit his flock since October 7, 2023.

GLOBAL PORPHYRIA DAY IS MAY 18 - United Porphyrias Aims to Raise Awareness, Research and Support for Rare Disease prn.to/3yhgvl1

‘’Uroporphyrinogen will accumulate’’
‘’The pyramid tracts decussate at this level’’
‘’Angiotensin II is a potent vasoconstrictor’’
‘’Arbor Vitae’’
‘’21-hydroxylase deficiency leads to the formation of more androstenedione’’
‘’Tunica Albuginea’’
‘’Porphyria cutanea tarda’’

Some days with #porphyria are so hard to get through. What has helped you keeping going?

Follow us to hear more stories of patients like Gabriela and visit myporphyria.org to get your #MyPorphyria templates to share your experience.

#GlobalPorphyriaDay

Finding the words to describe your porphyria can be hard. How do you explain what it's like?

Get your template to share for Global Porphyria Day on May 18, and see other patient's stories at porphyria.org/get-involved/p…

#MyPorphyria #GlobalPorphyriaDay   #gpd2024 #porphyria

Meet Porphyria Rabbit! Also known as 'Vampire Disease'

The association between porphyria and vampire lore comes from the fact that some individuals with porphyria experience symptoms like severe sensitivity to sunlight, which can lead to blistering and disfigurement of the skin.

Tonight the #CNTower will be lit purple for Global Porphyria Day / Ce soir, la #TourCN sera illuminée en violet pour la Journée mondiale de sensibilisation à la porphyrie

The human immunodeficiency virus triggered porphyria cutanea tarda for a man in Spain. Once his HIV was under control, his porphyria eased, a report says. buff.ly/4bMaj35