Porphyria Awareness Week and Global Porphyria Day coming up
The seven-day awareness campaign kicks off May 12
The seven-day Porphyria Awareness Week campaign kicks off May 12 to spread the word about porphyria and culminates with Global Porphyria Day on May 18, a Sunday.
The theme of this year’s observance is “Think Porphyria,” according to the American Porphyria Foundation, which is joining forces with other organizations in the Global Porphyria Advocacy Coalition to raise awareness about the disease. The foundation especially hopes to get medical providers to think about porphyria when caring for people who show symptoms of the disease, which is often unrecognized and underdiagnosed.
“We can help our medical teams remember to ‘Think Porphyria’ when they are confronted with the porphyria symptoms,” the association said on its website.
Porphryia is made up of a group of rare disorders caused by problems with producing heme, a molecule that helps red blood cells carry oxygen through the bloodstream. Disrupted heme production causes intermediary molecules called porphyrins and other precursors to build up to toxic levels, leading to symptoms that may include discolored urine, pain, and skin sensitivity from sunlight.
Porphyria awareness every day of the week
For this year’s Porphyria Awareness Week, the American Porphyria Foundation will promote a different activity for each day.
On Monday, the foundation is encouraging porphyria community members to wear hats in recognition of people with photosensitive forms of porphyria who have to minimize their exposure to sunlight. On Tuesday, members are encouraged to deck themselves out in purple, the color used to represent porphyria due to the purplish tint the disease causes in urine.
On Wednesday, members will take to social media to share images of their pets decked out in advocacy gear, while patients and caregivers are urged to share their experiences with the disease on Thursday on social media.
Landmarks in Canada and the U.S. will be lit up in purple on Friday to honor those with porphyria, while Saturday will feature a special episode of the foundation’s podcast with Mike Boone, a porphyria patient who will share his experience with the disease.
For Global Porphyria Day on Sunday, the porphyria community is encouraged to come together and support each other, sharing stories and hope.
The United Porphyrias Association is also ramping up advocacy efforts for Global Porphyria Day. Along with encouraging members to put on purple gear, the association has provided prompts to encourage discussions about porphyria on social media and is also running an online video challenge where people with porphyria can record themselves screaming or using a scream sound effect to convey the intense pain porphyria can cause. Social media posts can be shared with the hashtags #PurpleforPorphyria and video challenges can be tagged with #RealPeopleRealPain.
“Global Porphyria Day is an annual day of awareness, where we come together as an international community to share our stories and advocate for greater understanding, timely diagnosis, and a world free from the pain and challenges of porphyria,” the association states on its website.
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