At the age of 16 I suffered an extreme lung hemorrhage that nearly took my life, and four months later was diagnosed with GPA/Wegener’s (Wegener’s Granulomatosis at the time). Since then I have gone through standard treatments, suffered 2 relapses, and struggled with injections, steroids, and maintenance medication. Through my teens and early 20’s I realized I wanted to do something to fight back against this rare disease, and help others who had been diagnosed as well. A friend inspired me to do something unprecedented to raise support for vascular disease, but it took me several months to decide exactly what that was.
In January of 2011, I made a phone call to Lynn Corwin, the Cleveland-Akron chapter leader for the Vasculitis Foundation. I had never met Lynn but somehow I knew she was the right person to call. I told her that I was thinking of starting a monumental project, that involved traveling around the country in the name of vasculitis awareness, and asked for her thoughts. She was thrilled with the idea, and much to my surprise, promptly asked me to be the featured speaker and musician at the next chapter meeting, where I introduced the project to my first big audience only 10 miles from my hometown.
Since that time, this awareness initiative named “Violin 4 Vasculitis” has seen 19 concerts in 15 states, raised almost $3,500 in support, and connected with a larger audience than I ever thought possible.
The goals of my project are:
- To raise awareness of vasculitis.
- To donate funds to the Vasculitis Foundation.
- To connect with patients and their families in each area, particularly teens afflicted by chronic illnesses.
Allison shared her story on CNN on February 26, 2014 and created her own video sharing her experiences of being diagnosed with GPA/Wegener’s at the age of 16. Allison’s goal for the video is to provide a perspective for young people because so much of the information provided is from the older person’s perspective – whether doctors, parents, older relatives, or elderly folk diagnosed with the same disorder. Allison hopes the video will “rally the troops of young people living with vasculitis, and drive the point home that there are LOTS of us who struggle with it.”
Allison provides an update on Violins 4 Vasculitis and her recent marriage in a video filmed at the International Vasculitis Symposium in June 2015.