Spooky Porphyria Facts: Social Media Campaign
For Halloween 2025, we highlighted “spooky facts” about porphyria across our social media channels to raise awareness about this rare disease.
The facts and references can be found below:
Canadian Association for Porphyria/Association Canadienne de Porphyrie:
Halloween Spooky Porphyria Facts
Acute Hepatic Porphyrias (AHPs)
1. “Fifteen years of haunting ERs and clinics before the name ‘Porphyria’ is whispered.”
Road to diagnosis: Data show a mean diagnostic delay of 15 years for patients living with Acute Hepatic Porphyrias (AHPs).
Data Source + Location: Abstract second line
https://pmc.ncbi.nlm.nih.gov/articles/PMC10491361/
2. “When it comes to AHP, not all nausea remedies are friendly spirits — check before you treat.”
Dimenhydrinate (marketed as Gravol in Canada) is an over-the-counter (OTC) antihistamine additionally used for the prevention and relief of nausea and vomiting (N/V). However, this medication is contraindicated in AHP.
Data Source + Location: First paragraph re: Mechanism of action Dimenhydrate.
https://www.ncbi.nlm.nih.gov/books/NBK349880/
Data Source + Location: Suggested management for acute episodes re: contraindication.
https://www.sciencedirect.com/science/article/pii/S0009912024000869
3. “When research overlooks whole populations, health inequity becomes the monster under the bed.”
There are sparse studies investigating AHPs in non-white populations, potentially leading to reduced recognition of AHPs. There may be an increased risk of AHPs amongst patient populations with psychological and OBGYN disorders. Despite this potential, involvement of these specialties is often lacking in both diagnostic and supporting care.
Data Source + Location: Fourth paragraph under Conclusion
https://pmc.ncbi.nlm.nih.gov/articles/PMC11661304/
4. “The spooky adoption and implementation gap.”
The Canadian guidance for diagnosis and management of acute hepatic porphyrias was published in 2024 to standardize practice across Canadian provinces; however, implementation gaps remain regarding the extent to which provinces have fully adopted the guidelines.
Data Source + Location: https://www.sciencedirect.com/science/article/pii/S0009912024000869?via%3Dihub
5. “Triggers are eerily common.”
Common triggers documented to exacerbate attacks of AHP include hormonal shifts, infections, certain drugs, alcohol, dieting and fasting.
Data Source + Location: Agents/circumstances to avoid/Alternative Medical
Therapies/Active (Symptomatic) AIP/Summary Supportive care.
https://www.ncbi.nlm.nih.gov/books/NBK1193/
6. “It’s not black magic — just bureaucracy.”
Givosiran (GIVLAARI®), an RNAi therapy for the treatment of recurrent acute attacks of AHP, received a positive reimbursement recommendation from the Canadian Agency for Drugs and Technologies in Health (CADTH)/Canada's Drug Agency (CDA-AMC) and is Health Canada-authorized. However, the reality of uneven access persists, as CADTH's advice is non-binding, and each province and territory decides upon final coverage.
Data Source + Location:
Givlaari specific: https://www.cda-amc.ca/sites/default/files/Drug_Review_Process/Drug_Reimbursement_Review_Procedures.pdf
CADTH/CDA’s procedures: https://www.cda-amc.ca/sites/default/files/Drug_Review_Process/Drug_Reimbursement_Review_Procedures.pdf
Cutaneous Porphyrias
1. “Double trouble!”
Variegate Porphyria (VP) and Hereditary Coproporphyria (HCP) are doubly impactful neurocutaneous porphyrias (NCPs) presenting with cutaneous manifestations in addition to acute symptoms.
Data Source + Location: Introduction, sixth line.
2. “Still waiting for a little magic north of the border.”
Marketing authorization for Afamelanotide (SCENESSE®) has been successful in the United States, Europe, Israel and Australia. Currently, patients in Canada access treatment through a Special Access Program (SAP), with broader availability expected upon future Health Canada authorization. However, the review has been extended to 2026, potentially creating interim access gaps for patients.
Data Source + Location: Second page of PDF
https://www.clinuvel.com/wp-content/uploads/2024/12/20241223-health-canada.pdf
3. “Lighting standards — the overlooked monster.”
People with protoporphyria can experience negative quality of life impact and pain due to exposure from indoor lighting. In line with accessibility ramps for mobility, indoor lighting which minimizes blue light exposure in schools and workplaces helps create inclusive spaces.
Data Source + Location: Under Non-pharmacologic management
https://pmc.ncbi.nlm.nih.gov/articles/PMC9968824/
4. “Haunted by distance.”
In Canada, the distribution of dermatologists is uneven. In urban centers, there can be 5.6 dermatologists per 100,000 people, compared to just 0.6 in rural areas. This disparity can pose significant challenges for patients, such as long travel times and delays in receiving care.
Data Source + Location: (Abstract and first two paragraphs of introduction)
https://pmc.ncbi.nlm.nih.gov/articles/PMC11402261/
5. "Patients should not have to fight in the shadows alone.”
In a 2023 national survey of Canadians with rare diseases, 63% reported not having access to a care coordinator, and 58% did not feel they had access to all the information they needed. Many spoke of navigating the system alone and having to advocate for themselves.
Data Source + Location: (Care coordinator pg 37, information pg 9, self-advocate pg 8)
https://www.raredisorders.ca/uploads/Documents/CORD-Rare-Disease-Survey_Full-Report_Feb-2870-2.pdf