The VF YouTube 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.
Each week during Awareness Month we will feature two videos from people who have an extraordinary story to share about living with vasculitis.
Lois and Cutaneous Polyarteritis Nodosa
In this video, Lois talks about her diagnosis of Cutaneous Polyarteritis Nodosa which left her with a very large and painful
open wound on her elbow. She describes the pain as the worst she ever experienced in her life. Only through a regimen of
steroids and other drug therapies did the wound begin to heal. Interestingly, one of the things her doctor suggested was using blood thinners and vinegar/water to promote the healing.
Lois also gives some cautionary advice to patients who research information on the Internet about vasculitis. ” The first thing I saw was an article that said if you have Polyarteritis Nodosa that you can only expect to live about five years. That terrified me.
However, as I dug deeper and visited wonderful sites like the Vasculitis Foundation, I learned that it was a disease that could be managed and it wasn’t a death sentence. Thankfully we have a resource like the VF with accurate, dependable information.”
View previous Extraordinary Vasculitis Stories here:
James Hughes / GPA Wegeners
James is a superior athlete who has participated in numerous Ironman Competitions. When he received a diagnosis of GPA/Wegener’s James was determined to literally “get back in the race”. In this video he details his inital symptoms, and fortunately getting an early diagnosis of GPA/Wegeners. An inspiring story!
Amanda / Takayasu Arteritis
In this video, Amanda talks about her “lucky” day on Friday the 13th that lead to finding a cause of her lingering symptoms. She discusses the critical complications from her diagnosis of Takayasu arteritis, and the challenges it presented as she and her husband planned to have a family.
Toni-Jane / Takayasu Arteritis
This Extraordinary Vasculitis Story comes from Toni-Jane who lives in New Zealand. In this video she talks about getting a diagnosis of Takayasu arteritis and the impact it had on her life in her mid-twenties.
Her story will connect with patients who have experienced the debilitating fatigue that often accompanies vasculitic diseases. She says the fatigue can take an emotional toll especially on someone who has been typically active before the diagnosis.
Toni-Jane also discusses the challenge of finding a physician in a small country like New Zealand who can treat a complex, rare disease such as Takayasu arteritis.
Tell your story! Contact Ed at [email protected]