Activities Abound for Vasculitis Awareness Month

Activities ranging from sporting wearable art to highlighting “patient heroes” are underway to mark Vasculitis Awareness Month (VAM), set aside each May to call attention to this rare autoimmune disease. International Vasculitis Day is May 15.

Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of vasculitis.

For its part, the Vasculitis Foundation, which is celebrating its 35th year, is asking supporters this month to check out this video about the nonprofit organization that, in addition to heightening awareness of vasculitis and its forms, assists patients and funds research.

“We invite you to join us as we continue our mission to improve the lives of our patients,” the organization states on its awareness month webpage.

The foundation also has an interactive calendar for this month to help participants stay involved. Daily activities include attending a U.S. Food and Drug Administration public advisory hearing to learn about a treatment candidate (avacopan), using #VAM2021 icons, attending a support group meeting, subscribing to the foundation’s podcasts, and joining a study about vasculitis and pregnancy.

Other activities include learning about international vasculitis research efforts, posting to social media patient “victories,” thanking a caregiver, viewing videos of the organization’s patient conferences, learning about the Vasculitis Patient-Powered Research Network, learning how to “journal,” and participating in a COVID-19 vaccination survey.

In addition, the foundation is encouraging supporters to take time this month to check out its VAM video archives. The organization has produced a special video to commemorate the month each year since 2012. The productions are widely viewed and some garnered a national award.

Patient, advocate and runner Brandon Hudgins is seeking to raise $10,000 in a foundation campaign called Victory Over Vasculitis. Supporters can join a team or make a donation.

In its Patient Heroes project, the organization is highlighting everyday victors in the vasculitis community. To increase awareness of the disorder, 10 personal stories will be told through baseball-type trading cards. This month, the organization is featuring videos in which individuals tell their stories. In one, Erica Barram, who has microscopic polyangiitis, talks about the beginning of her diagnostic journey.

“I had problems breathing, it was hard to get out of bed, to pull myself out of bed, and I looked severely anemic, which I didn’t know what anemia was at the time but my boss did recognize that, so she sent me back to the doctor,” she said. “They did some tests at that doctor’s office and realized that I was really not looking good with those test results and so they sent me to the hospital and it looked like I had bilateral pneumonia. … I didn’t know vasculitis existed and I felt blindsided by the whole situation.”

Meanwhile, the organization’s Pineapple Project involves supporters wearing or sharing on social media artwork that depicts patients’ “breakthrough” experiences, accompanied by educational tidbits such as the challenge of coping with vasculitis.

Supporters also can mark the month by swapping out their current social media graphics with Facebook frames and other art designed specifically for this month.

Elsewhere, Vasculitis UK is asking supporters to mark International Vasculitis Awareness Day by creating a blog or video of their outdoor activities — an afternoon tea or informational luncheon, for example — and sharing them on social media.