Vasculitis Awareness Month reminds ‘you are not alone’

Vasculitis Foundation is taking the lead with a number of activities

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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May is Vasculitis Awareness Month and this year there are plenty of ways to get involved and raise awareness about the disease under the slogan “Navigating the unknown: You are not alone.”

To help people stay engaged throughout the campaign, the Vasculitis Foundation has assembled an interactive calendar with daily challenges for the month, dubbed #VAM2023.

“Together, we can raise awareness of vasculitis and help pave a path toward a better life, better treatments, and a cure,” the foundation explains on its campaign webpage.

Vasculitis comprises a group of rare autoimmune diseases marked by inflammation in the blood vessels, which can damage organs and tissues if left untreated. ANCA-associated vasculitis (AAV) is a type of the disease that affects the small blood vessels due to self-reactive antibodies, or ANCAs, being produced.

Each year, the foundation asks the vasculitis community to nominate people for patient and care partner heroes. Judges from outside the community picked eight stories to be featured on collectible baseball-type trading cards to help people know more about what living with vasculitis is like. This year, seven patient heroes have AAV. Their personal stories can be watched online.

“When faced with a diagnosis, the road ahead may look scary. But that’s when our patients with vasculitis tap into their superpowers of strength, hope and resilience,” the foundation states on the project’s website.

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Participating in vasculitis awareness

There are lots more activities.

Between May 3-5, the foundation is encouraging people to spread the word about vasculitis by swapping their social media picture with a #VAM2023 graphic, and by sharing a special graphic on social media that finishes the sentence, “One thing I wish you knew about vasculitis…” Participants are encouraged to include the hashtag #VAM2023 and a tag to the Vasculitis Foundation in their posts.

Patients are also invited to share their own “Victory Over Vasculitis” stories, a personal goal or achievement that takes into account where they are in their vasculitis journey.

On May 7, there will be a live webinar on Zoom where patients will share their advice on living with a diagnosis. Anyone interested can sign up to attend.

Other virtual events include support group meetings that will offer opportunities to learn about vasculitis and connect with others who have the disease.

The foundation is also inviting people to participate in a virtual trivia tournament that will have its first round on May 11 and its final round on May 25. Teams of up to five people can participate in the general knowledge trivia game and raise funds for the foundation through their fundraising page.

May 15 marks International Vasculitis Awareness Day and the foundation will map those who are helping to raise awareness by getting them to answer one question: “What country do you live in?

The foundation is also providing educational videos in Spanish for the Latino/Latinx vasculitis community.

There will also be many opportunities to donate to vasculitis research and help the Vasculitis Foundation continue its mission to support those with the disease. This year, every donation will be matched by two donors until the total funds reach $6,500.

The vasculitis community is also invited to register for the 2023 International Vasculitis Symposium to be held July 14-16 in Chicago and virtually. The goal is to bring the community together and “bring everyone up to date on the advances made in treatments and research,” the foundation explains on the event’s page.

This year’s Vasculitis Awareness Month is sponsored by Amgen and GSK.