Vasculitis Awareness Month aims to put focus on community voices

Personal stories and activities highlight awareness day, month this May

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by Jacob Harney, PhD |

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May will be an activity-filled month for people living with vasculitis — and for doctors, researchers, and advocates in the field — as the world recognizes Vasculitis Awareness Month (VAM), and International Vasculitis Day on May 15.

Vasculitis is a group of rare autoimmune diseases characterized by inflammation and damage to blood vessels. ANCA-associated vasculitis (AAV) is a type of the disease in which self-reactive antibodies called ANCAs ultimately affect small blood vessels, causing damage to tissues and organs.

Throughout May, ANCA Vasculitis News Today is running a series called “ANCA Vasculitis Community Spotlight,” which will feature people impacted by AAV who have been invited to share their stories. The first spotlight, entitled “A vasculitis diagnosis changed my life, but it doesn’t define me,” tells the story of Rachel Young, who was diagnosed with AAV three years ago but is celebrating life at age 89.

Jessica Barrale Cao, director of social media at BioNews, which publishes this website, said that “the Community Spotlight series allows us to amplify the patient and caregiver voice as community members share personal lived experiences with ANCA vasculitis.”

“These stories of challenges, hope, and advocacy are shared on our website and through our social media channels throughout the month of May,” Cao added.

Those interested can follow the campaign on Facebook and Instagram for more stories by using the hashtag #ANCASpotlight.

“The ANCA Vasculitis patient community may be small, but our voices are loud and strong,” said Suzaane DePaolis, an AAV patient and a columnist for the website. “Our stories are varied but each one is filled with hope for the future as we share what it’s like to live with the various types of ANCA vasculitis.”

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Vasculitis Foundation offering interactive Awareness Month calendar for May

For its part, the U.S.-based Vasculitis Foundation, in partnership with Amgen and GSK, is marking the month with an easy interactive calendar that’s filled with daily challenges for the 31 days of May. It’s dubbed #VAM2024.

“Vasculitis Awareness Month is an international effort to educate the general public and medical community about this rare disease,” Joyce A. Kullman, the Vasculitis Foundation’s executive director, said in an email to ANCA Vasculitis News.

“Most people have never heard of vasculitis but we know when patients are diagnosed quickly and receive effective treatment, they do better,” Kullman said, adding, “#VAM2024 celebrates and recognizes the strength and resilience of our community amid the many challenges they face.”

Vasculitis Awareness Month is an international effort to educate the general public and medical community about this rare disease. … Most people have never heard of vasculitis but we know when patients are diagnosed quickly and receive effective treatment, they do better.

The calendar suggests, for May 3, getting online and starting a Facebook fundraiser. Supporters can purchase t-shirts, take selfies, and share them on social media using the hashtag #VAM2024.

On May 5, patients, caregivers, or loved ones can share a song that lifts spirits when struggles arise. “Share the best pick-me-up song with us and we just might include it on our community-wide vasculitis playlist,” the foundation states on the campaign website.

Similarly, on May 7, patients and advocates are encouraged to share their story. Anyone living or caring for someone with vasculitis is asked to share their vasculitis story on social media to create a united, global impact by using the hashtags #VAM2024 and #VasculitisLooksLikeMe.

Altogether, 11 personal stories will highlight the nonprofit’s Community Heroes campaign, which has as its goal, its website states, to “increase awareness of vasculitis to those outside of the vasculitis community while providing hope and inspiration to all.”

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Donating money, writing ‘heart-spoken’ letters are ways to get involved

Also on May 7, the foundation will host a webinar in which Sebastian Sattui, MD, director of the UPMC Vasculitis Center, in Pittsburgh, will share some of the most notable research data presented early last month at the 21st International Vasculitis Workshop, in Spain.

Kullman also will be joining the webinar to share the successful results of the Barcelona Patient Conference, which brought together patients, patient advocacy groups, and speakers from several countries.

Other virtual events include support group meetings, in which people affected by vasculitis can learn about the disease and connect with others in the community.

Toward the middle of the month, patients and supporters are encouraged to write “heart-spoken” letters and notes (on May 10) and record encouraging messages (on May 14) for others in the community living with vasculitis.

While donations are always welcome, giving on International Vasculitis Day — May 15 this year — can triple a donation’s impact, up to $40,000. The foundation recognizes a handful of generous, anonymous donors who have agreed to provide the matches.

The organization also asks supporters to join in celebrations of World Eosinophilic Diseases Day on May 18. The following day, the vasculitis community is encouraged to dance with Lisa Pritzl, the founder of Empowerment Dance, via a recorded class.

On May 23, patients and caregivers interested in actively contributing to vasculitis research are asked to join the Vasculitis Patient-Powered Research Network (VPPRN).

The VPPRN “is an international research network of people living with vasculitis, scientists, clinicians, advocates, and family members. They’re dedicated to improving healthcare and quality of life for people with vasculitis through high-level clinical research,” as stated on the website.

For those asking about the Vasculitis Foundation, the organization states on its website: “We are patients with vasculitis, care partners, friends, family, physicians, and researchers advocating for early diagnosis, better treatments, and improving quality of life for people with vasculitis.”