Mariette Zandbergh

Why do I participate in research?

“I was diagnosed with CNS Vasculitis in November 2021. I joined the VPPRN because I wanted to learn more about not only my type of vasculitis, both all forms as well. Patients are more at ease knowing what to expect in the future (symptoms, testing, duration, new developments, medications, etc.). I know how it feels, not knowing how you are going to feel in the afternoon, or even the next day. This is both physically and mentally taxing and has been a barrier I’ve personally had to overcome. By participating in research, we can change this. The biannual forms are a way for the VPPRN to collect important data from patients like us to better understand vasculitis. I know the data I am sharing about my unique experience is helping doctors and researchers work toward improving the quality of life for all patients with vasculitis. 

Being positive and motivated plays a huge part in my life from day to day. This is my main reason for being part of this community: keep patients positive, motivated in moments when it seems to be the darkest, and making sure that no one feels alone.”

-Mariette Zandbergh