Awareness and advocacy are extremely important to every rare disease, and porphyria is no different. That’s why we celebrate Porphyria Awareness Week (PAW) every year from April 2nd until the 9th. The week’s events are being organized by the Global Porphyria Advocacy Coalition (GPAC), and they include everything from social media campaigns to film watch parties to legislative advocacy.

About Porphyria

Before we learn about this week, it’s important that we understand what it is that we’re raising awareness of. Porphyria is a rare blood disease resulting from a buildup of natural chemicals that make porphyrin, which are necessary for the function of hemoglobin. Hemoglobin is important, as it carries oxygen to tissue and organs and binds iron. If the levels of porphyrin are too high, significant issues occur.

Porphyria is inherited for the majority of cases, with one or both parents passing down the gene, as there are dominant and recessive forms of this disease. Even if one does inherit these genes, it does not always equate to having the symptoms. Latent porphyria can occur, and it is often the case when people carry the abnormal genes. While the genetic factors are the greatest factor in having porphyria, there are environmental factors as well. These triggers include excessive exposure to sunlight, certain medications, recreational drugs or alcohol, dieting, smoking, physical or emotional stress, or menstrual hormones. Any of these things may encourage the body to produce a buildup of porphyrin.

Two categories of porphyria exist: acute and cutaneous. Acute affects the nervous system while cutaneous affects the skin, but types of porphyria exists with symptoms from both of these categories. As there are various types of this disease, symptoms vary from person to person. Symptoms that appear with acute porphyria include severe abdominal pain, pain in the chest, legs, and back, constipation, diarrhea, vomiting and nausea, pain, tingling, or weakness of the muscles, discolored urine or problems with urination, mental changes such as hallucinations or anxiety, problems with breathing, seizures, heart palpitations, and high blood pressure. Symptoms of cutaneous porphyria affect the skin and are a result of sensitivity to sunlight. These symptoms are burning pain from exposure to sunlight, sudden swelling and pain of the skin, blisters, changes in skin color, itching, and excessive hair growth. If these symptoms are not treated during an attack, they can result in permanent damage of the skin or life-threatening complications.

Porphyria Awareness Week

Now that we know what porphyria is, let’s dive into this special week. GPAC, which is the umbrella organization for all porphyria advocacy organizations, is spearheading PAW, with members like the American Porphyria Foundation (APF) and United Porphyrias Association (UPA) also organizing many opportunities to raise awareness.

Raising Awareness with GPAC

Here are a few ways you can join in on PAW with GPAC:

• Head here to download these helpful resources!
  • Some examples of resources include social media banners, event signs, a media toolkit, logos, and more
• Go #PurpleforPorphyria by wearing purple in some way on April 8th
  • Share pictures on social media to spread the word!

Raising Awareness with APF

You can find the full details of the APF’s activities here. For now, here’s a quick synopsis:

• Use the hashtag #Fightporphyriatogether on social media
• April 4th is “hat day,” in which participants are encouraged to wear a hat
  • This represents the porphyria patients who experience photosensitivity and wear hats to combat that symptom
• April 5th is the pet parade! Post pictures of your pet celebrating PAW to Facebook!
• Take to social media on April 6th to show all of the ways that you’ve been raising awareness for the porphyria community
• April 7th is meant for participants to share “tip top tips” that help porphyria patients
  • Voting will take place to pick the best “tip top tip”
• April 8th is for wearing purple and sharing your outfits!
• Also on April 8th, participants can watch APF member Sean Albright play Gran Turismo on Twitch

Raising Awareness with UPA

The United Porphyrias Association is also offering resources, such as:

• Social media posts for LinkedIn, Facebook, Instagram, and Twitter
• Printable poster
• #PurpleforPorphyria card
• Event one-sheeter
• A sign for photos
• A discussion guide for the documentary “Two of Me,” which the UPA also encourages members to screen

Looking Forward

These efforts are not just centered in the United States. Another GPAC member, the British Porphyria Association, is offering resources for its audience, for example. Join in and do your part to raise awareness now!

You can read more about Paw here.