Porphyria Awareness Week Showcases the Power of a United Front
Named from the ancient Greek word “porphura,” which means purple, the group of diseases called porphyria often is identified by that same color, according to Scientific American. Today, purple helps to unite members of the porphyria community. This week, you’ll find me gathering my purple gear in anticipation of Porphyria Awareness Week, which starts on Saturday.
The theme of this year’s awareness week, which extends through April 9, is “Porphyria Together.”
The porphyrias are eight types of highly rare diseases characterized by either neurovisceral or cutaneous symptoms. Patients with porphyria experience myriad issues related to the diagnosis, management, and treatment of the disease. Awareness efforts can help to improve diagnosis speed and accuracy, pain management, access to approved treatments, and funding for research to develop new knowledge and treatments.
Led by the Global Porphyria Advocacy Coalition, or GPAC, an umbrella organization for national porphyria patient advocacy groups, Porphyria Awareness Week is an opportunity for our community to lift our voices in unison to bring recognition to this group of rare diseases.
As a member of the GPAC team that developed the awareness plan, I feel proud that there is genuine excitement among patient advocacy organizations to share resources with our members and to watch as they come to life in their communities.
The theme “Porphyria Together” recognizes that a united front of patients, caregivers, physicians, and pharmaceutical partners working together to raise critical awareness of the porphyrias will increase the power of our message.
I am also inspired by the “Tell 15” campaign launched a month ago on Rare Disease Day, with the release of the documentary film “Two of Me,” about the impact of living with acute hepatic porphyria (AHP). Because patients can wait up to 15 years for an accurate AHP diagnosis, the documentary encourages viewers to “Tell 15” others about the film.
This is exactly the momentum needed for Porphyria Awareness Week. The power of the voice needs to be multiplied and spread — and that includes by you!
I hope you will join the awareness effort. There are so many things you can accomplish, such as:
- Downloading resources to share with friends, family, colleagues, and classrooms.
- Sharing information about porphyria with your physician.
- Sharing your personal story about porphyria with others.
- Uniting on social media with the hashtags #PorphyriaTogether, #PorphyriaAwareness2022, and #PurpleForPorphyria.
- Wearing purple on Friday, April 8 in honor of those with porphyria.
As with Rare Disease Day, awareness doesn’t end on the last day of Porphyria Awareness Week. We must remain vigilant with our messaging throughout the year to continue raising our voices and bonding together to impact the disease.
Please join me in raising awareness about porphyria. Together, we can make a difference.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.