The Vasculitis Foundation YouTube Awareness Awareness Channel features members of the vasculitis community sharing the impact that vasculitis has had on their lives.The Vasculitis Foundation launched the Vasculitis Foundation Extraordinary Stories Video Project in 2012 and the project is an ongoing effort. The purpose of the project is to spread awareness and understanding by sharing vasculitis stories about extraordinary people to highlight the impact these chronic conditions have on individuals living with vasculitis, and also their families, friends and loved ones.

When you watch the videos, you will learn that people from all walks of life and from around the world are represented. We hope these videos will act as a call to action detailing several ways YOU can support the mission of the Vasculitis Foundation by becoming a member, donating, volunteering and spreading awareness every day by telling your story. Together, we can work to improve the lives of patients living with vasculitis.

Watch and learn! Below are a select group of extraordinary stories from our kids and/or parents or click here to access the complete library of the stories on the VF’s YouTube Awareness Channel.


Curtis was seven years-old when he was diagnosed with Polyarteritis nodosa.

In this video, Curtis; his mother Terry;  and father, Jeff, talk about the impact on their family. Today, Curtis’ future looks bright as he continues in remission.

Click here to watch Curtis’ video.

 

 


Meaghan has Eosinophilic Granulomatosis with Polyangiitis (Churg Strauss Syndrome).

Meaghan’s symptoms began to manifest in her early teenage years with bouts of asthma, and sinus infections that never completely disappeared.  At one point strange red dots began appearing on her legs, followed by severe joint pain.  Eventually, Meaghan was diagnosed with Churg Strauss Syndrome. Watch her extraordinary journey as a pediatric patient fighting a rare illness.

Click here to watch Meaghan’s video.
 


Nick, Microscopic polyangiitis (MPA)

Nick’s extraordinary story about being diagnosed with vasculitis (MPA) will likely move you in many different ways. At the age of twelve, Nick began to exhibit a multitude of symptoms that perplexed his parents, Greg and Nicole.

Greg, a physician, suddenly found himself in the role of a medical detective trying to understand the cause of his son’s physical decline. Fortunately their trail led to knowledgeable doctors and the diagnosis of MPA came relatively quickly.

Nicole and Greg talk candidly about the challenges of caring for their son in a world of “new normal”.
Nicole explains how an ordinary shopping trip became an overwhelming ordeal due to the critical diet changes imposed on her son.

Nick describes the frustration of being an athletically competitive, healthy kid who suddenly found himself unable to participate in his usual activities. His inner resolve shines through as he talks about how the illness gave him the motivation to help other young adults with vasculitis.

Click here to watch Nick’s video.


Whitney,  Granulomatosis with polyangiitis (GPA, Wegener’s)

 


Matt, unspecified vasculitis

 


Adrienne Rosa and Behcet’s Disease

 


SHARE YOUR STORY! There is no cure, but with your help there is hope. You have an Extraordinary Story to share – We want to see it!

The Vasculitis Foundation wants to showcase your Extraordinary Video Story on our website and YouTube Awareness Channel. Your story can inspire, educate, and help others who are living with vasculitis. We need people of all ages who are living with all of the different vasculitic diseases to raise awareness about the impact vasculitis has on people’s lives.

All you need to do is film yourself (or caregiver) in a 5-7 minute video, upload (or put on a DVD and mail it to us), fill out the VF Media Release Form, and we will upload to our YouTube Awareness Channel.

Here are links to help you film/submit your extraordinary vasculitis story:

1. Before you begin filming, watch this video so you can tell your story in the most effective way.

2. Print off this cheat sheet that tells you all you need to know about how to film and submit your extraordinary story video.

3. Once you have completed your video, visit this page to upload your file to the VF, or learn other options to deliver it to us.

If you have any questions about the Extraordinary Vasculitis Stories Videos, please contact Ed Becker, the senior producer of the video series.