Creating a Better Way of Life by Sharing Our Stories

Our Victories Over Vasculitis

We Want To Hear Your Victory Over Vasculitis

Please submit a short video (30 seconds or less) using the following script:

  • Start with “My name is ________ (first name) and I have ______ vasculitis, one of the 20 types of vasculitis. I live in ______.” (city, state/province, country)
  • Then say “My victory over vasculitis is ______________________.” (Tell us about your personal victory over vasculitis.)

Submit your videos through Transfer Now using the email [email protected]

What is a Victory Over Vasculitis?

  • It is personal.
  • It is a goal or achievement that you define for yourself.
  • It takes into account where you are in your vasculitis journey.

Here are a few examples:

  • “A victory for me is having energy to spend time with my grandkids.” – Darlene A.
  • “My victory over vasculitis is to hike three times a week with my wife, despite my fatigue.” – Rob C.
  • “Attending the next VF Symposium. That’s my goal – my victory despite my vasculitis. I will do it!” – Amy L.

Thank you in advance for sharing your victories with us. We regret that we may not be able to use all submissions.

Wellness Program Components   

CHOOSE FROM THE OPTIONS BELOW TO EXPLORE ADDITIONAL RESOURCES.

Sustaining Your Journey

Exercise is beneficial both physically and mentally. Art, Brandon, and Kathy offer encouragement, support, and suggestions to help you exercise in a way that supports your individual health and wellness goals. From gentle stretches you can do while seated, to cardio and strength training options for all levels, these resources are designed to help you move your body in a beneficial way at every stage of your vasculitis journey. 

Navigating Your Journey

Living with vasculitis requires mental strength and fortitude. The impact vasculitis has on the body is not limited to physical symptoms. Vasculitis, and the medications used to treat vasculitis, can affect body image, mood, and thought processes (think “brain fog”). The resources and guidance from Stacey are designed to be personalized to meet your needs right where you are now. 

Guiding Your Journey

You are the expert on what is happening in your body, and it is important to your health that you know how to be your own advocate. Dianne, Jenn, and John have designed self-advocacy resources that will provide you with the tools and knowledge you need to communicate effectively with your healthcare team and educate others about vasculitis.   

Navigating Your Journey
You Have The Power

Join One of our Vasculitis Support Groups

The Vasculitis Foundation sponsors weekly and monthly support groups for people living with vasculitis, their care partners, and their families. Find out more about VF Virtual Support Groups

Victory Over Vasculitis Support and Wellness Program

The original Victory Over Vasculitis (VOV) initiative began in 2016 and was led by Brandon Hudgins, who was diagnosed with GPA/Wegener’s in 2008. Despite repeated disease flares, Brandon became one of only 448 Americans to race a mile in under four minutes and earned a spot in the 2016 Olympic Trials. As people living with vasculitis around the world supported Brandon in his efforts to earn a spot in the Olympic Trials, Brandon in return encouraged them to become more active and live positive lives despite having vasculitis.

The VOV program has been a wonderful success, bringing together the vasculitis community from around the world to support, inspire, and challenge each other to be the best they can be.

Now Brandon has been joined in this initiative by Art, Dianne, Jenn, John, Kathy, and Stacey. Each of these VOV ambassadors lives with vasculitis every day, and each is in a different place in their vasculitis journey. Drawing on their personal and professional experiences, and their passion for helping others living with vasculitis, they have created resources designed to help you navigate your own Victory Over Vasculitis. 

Victory Over Vasculitis Ambassadors

The VOV Ambassadors are patients with vasculitis who are enthusiastic about the health and wellness of the entire vasculitis community. VOV Ambassadors advocate for the VOV program as a means to improve overall wellness. They are the driving force behind the VOV program and the resources it provides to other patients. 

Name: Art Diaz
Diagnosis: GPA
Year Diagnosed: 2017
Personal VOV Statement: “Helping other patients with their journey by connecting with them as we share our own experiences. We often feel alone and disconnected; however, we have an amazing vasculitis community that strives to help one another.”

Name: Jenn Gordon
Diagnosis: EGPA
Year Diagnosed: 2014
Personal VOV Statement: “I have met the most amazing and inspiring people since being diagnosed with vasculitis.”

Name: Brandon Hudgins
Diagnosis: GPA
Year Diagnosed: 2008
Personal VOV Statement: “You have the power to deal with the things that are in front of you.”

Name: Stacey Ivits
Diagnosis: EGPA
Year Diagnosed: 2002
Personal VOV Statement: “I believe in the transformative power of social connection for healing and well-being.”

Name: Kathy Olevsky
Diagnosis: MPA
Year Diagnosed: 2009
Personal VOV Statement: “I’ve really enjoyed my work as the VF webinar host. I know how much all that information has helped me and I hope we are meeting the needs of other VF patients.”

Name: Dianne Shaw
Diagnosis: GPA
Year Diagnosed: 1995
Personal VOV Statement: “Through the Vasculitis Foundation, patients and their families and friends are part of a vital network for information, support, and encouragement. These Victory Over Vasculitis programs can enhance and strengthen our resilience and connections.”

Name: John Stadler
Diagnosis: MPA
Year Diagnosed: 2017
Personal VOV Statement: “I enjoy seeing patients connecting with others and learning they are not alone.”

We want to hear about your Victory Over Vasculitis.

Click on “My Victory” to share your story.

Thank you to our Victory Over Vasculitis sponsor

The launch of this program was generously supported by GSK.