We can carry forward the momentum from awareness month
Here are some resources to help us be better equipped
As I look back on Vasculitis Awareness Month in May, I find myself grappling with a complex wave of emotions. On one hand, there’s undeniable excitement and a spark of validation. For once, the spotlight is on our disease, which usually lurks in the shadows.
ANCA-associated vasculitis is a devastating and often invisible illness, and the month of May offers our community — including patients, care partners, and families — a rare moment to be seen, heard, and acknowledged. It’s also a time to raise awareness, share our stories, and amplify the urgent need for support and more research.
Yet there is also a quietness that happens when the month is over, as if the topic will be stored away for another year. That makes me wonder if we can take the energy of the month and carry it forward into the summer and beyond.
After all, there is progress to celebrate. While a staggering 95% of rare diseases still have no approved treatments, ANCA vasculitis has seen two new therapies approved by the U.S. Food and Drug Administration in the last four years: Tavneos (avacopan) and Fasenra (benralizumab). To me, that is nothing short of remarkable. These breakthroughs mean that we have more options. They mean that we have hope.
Continuing on
Vasculitis doesn’t just attack the body; it rewrites lives. It forces patients to grieve the person they used to be and adjust to a new and unexpected reality. That kind of grief is hard to explain. It’s quiet, constant, and deeply personal. It reshapes relationships, future plans, and even the sense of self.
Given all of this, I’d like to share some powerful resources that have helped me feel better equipped, less alone, and more connected with others. I’ve decided to commit to carrying out one action per week, whether it’s learning a new thing, sharing my vasculitis experience with someone, thanking my amazing wife for being such a wonderful care partner, enjoying the moments when I feel OK because of new treatments, or just getting a pedicure with my mom.
If you’re a vasculitis patient like me, a caregiver, or even a family member, here are some things you might consider checking out:
Private Facebook groups: I consider these groups to be lifelines. They’re filled with people who get it. There are communities out there waiting for you. Just search Facebook for your specific condition (such as GPA, MPA, or EGPA, for example). Struggling to find one? Reach out, and I’ll help you connect!
The ANCA Resource Hub by Amgen: This website is a gold mine for those with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). It offers educational materials, emotional-support resources, and advocacy tools.
EGPA info from AstraZeneca: If you or a loved one is navigating eosinophilic granulomatosis with polyangiitis (EGPA), AstraZeneca has created a dedicated site full of rich educational content that is clear, digestible, and empowering. It’s definitely worth your time. Be sure to click on “I am a healthcare provider.” Don’t worry that this is a site for providers, go ahead and check it out!
Webinars by the Eosinophilic and Rare Disease Cooperative (ERDC): The ERDC has rolled out a livestream series covering the following topics:
- Quality of Life: A Personalized Tracking Tool Workshop, June 12
- Fasenra: Double Action for EGPA, June 26
- Keeping It Real: Surfacing Tough Topics With Your Provider, July 17
- Decision Tree: Best Practice For Care, Nov. 13.
These sessions are practical and empowering. Don’t miss out, register today!
What are we not telling our doctors? A new survey by the ERDC is also important. It explores the barriers patients face in being fully honest with their healthcare providers. Your input matters, and the results will be presented in October at the American College of Rheumatology’s Convergence 2025 conference in Chicago.
Community Spotlight by ANCA Vasculitis News:Â Every story in the Community Spotlight is a testament to the strength of patients and caregivers and the complexity that living with ANCA vasculitis entails. Take time to read, reflect, and share these voices from across the community. They are raw, real, and unforgettable.
Remember: You are not alone
This journey is hard. But there is a growing, resilient community that sees you, hears you, and stands with you. We are in this together. Be sure to follow ANCA Vasculitis News for educational news, insightful columns, and more. Let’s carry forward and process the hope, grief, anger, joy, and determination together. Let’s educate, advocate, and support one another. And above all, let’s keep pushing for better outcomes and brighter futures.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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