Community Outreach

Violin for Vasculitis: Raising Awareness One Note at a Time


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By Allison Boyt

At 16 years old, I was an aspiring concert violinist. At 17, while music remained a mainstay in my life, my new priority was survival. Nine years later, my story was featured on CNN – but the focus was not so much on the music as on what I did with it. The rocky passage from adolescence to adulthood had occurred in my life only after an unexpected setback.

It surfaced at the age of 16, when I began to show symptoms of illness — respiratory problems, fatigue, and a cough that brought up blood. It was determined that I had been suffering a severe lung hemorrhage, seemingly out of nowhere. After four months, three hospital visits, and one two-week sedation period, the doctors finally reached a diagnosis: granulomatosis with polyangiitis (GPA/Wegener’s), a rare type of vascular autoimmune disease. Even today we do not fully understand what may have triggered the illness to appear when it did; I had been a high school junior with an active lifestyle, but was no more stressed than an average busy teen.

The following months brought chemo treatments, my 17th birthday, a brand-new driver’s license, bouts of depression, and many physical and emotional challenges of playing the violin. But as I approached my senior year of high school, I knew that I wanted to attend a world-class institution to receive the highest level of musical training, so I applied to Oberlin College-Conservatory regardless of my medical condition and its uncertainties. It was a triumph to be accepted to the conservatory on scholarship, and I entered my freshman year full of hope for my music and for my health.

The family of vasculitis diseases are rare autoimmune disorders that cause inflammation of the blood vessels. There is no cure, but patients can go into remission. Three million people suffer from vasculitis – my form in particular affecting about 20,000 to 30,000 patients. There are 500 new cases diagnosed every year, as awareness in the medical field becomes more prevalent and doctors and researchers learn more about the condition. However, there is still much that is unknown – for example, what triggers an attack of the disease. So my time at college was marked by hospital visits, close monitoring of my lung & kidney function, and both my doctors and my parents repeatedly ensuring that I got adequate rest, to help keep the vasculitis under control.

My music teachers growing up were educators, and they were also mentors. Our lessons became a type of therapy, as their guidance centered not only on my musicianship, but how my helplessness in the face of chronic illness played into my performance. I learned to treat my bold onstage persona as a way of proving to myself that I could handle difficult music, just as I could fight through the medical challenges I faced offstage. Once at college, I became motivated by a couple of conservatory instructors who urged me to explore who I was as an individual and what I had to offer the world, and began the search for a fullfilling musical outlet. I yearned to use my violin performance for service and also somehow tell a story that only I had the ability to tell. The two paramount aspects of my life were music and my illness. Why not combine the two, and overcome something bigger than I could with either one separately?

In 2011 I founded a nonprofit organization, Violin for Vasculitis. Through V4V I travel to each of the 50 states to help promote awareness of this life-threatening disorder. In each state I play a free concert, consisting of diverse repertoire and incorporating local talent into the musical program. Interspersed with musical selections, I provide information on vascular disease and its dangerously unrecognizable symptoms – a presentation format that led one concertgoer to dub it an “informance.”

As of February 2015, V4V has performed 15 states; at least 6 more already have events planned for the rest of the year (and extending into 2016). Traveling takes a hefty bite out of anyone’s finances, and I didn’t want a lack of funds to stand in the way of what I wanted to accomplish. So in December of 2014 I gathered a “V4V Team” and submitted the project on Indiegogo, a crowdfunding site. Our goal was set at $5,000, which would ostensibly cover expenses for the year 2015. In just eight weeks of campaigning, we reached $5,285 – a renewed, tangible reminder of the public’s belief in V4V’s mission.

I had spent the first few months after my diagnosis trying to make myself believe that the vasculitis didn’t exist, or at least that it could be ignored while I resumed my normal life. As I would later come to realize, having a chronic illness means that there IS no “normal life” to which to return; my days are now a series of tiny adjustments. I may regain the basic routine I had before, but I must also allow for a schedule of doctor visits, medications, fatigue, and unexpected delays. I am on a series of maintenance drugs as well as blood tests once a month. Though I need to take caution around those with contagious diseases, I am otherwise happy and healthy, and have not experienced a hemorrhage since the initial attack.

CNN approached me in 2013, hoping to record a piece on V4V for their “Human Factor” segment, which aired in February 2014. I hadn’t always considered myself an “advocate,” but that’s exactly how I was being labeled, and it seemed to fit. My career as a musicians happens to make an excellent platform for the message I want to share. No matter where you go, most audiences can appreciate a free concert. The scope of V4V is ambitious, but I’ve found that people will stop to listen. And in this way, I’m reaching a broad spectrum of musical aficionados who may not otherwise be educated on a rare medical condition.

Over the years, I’ve learned to let the vasculitis manifest itself in a way that it doesn’t offset my goals or ability to maintain a positive outlook. Perhaps no one understands the concept of “a new normal” better than a newly-diagnosed medical patient. Life goes on, and somehow we have to as well, though we have an additional burden to carry. I plan to remain an advocate long after Violin for Vasculitis has seen all 50 states.

Looking forward to the next year….

Allison

See V4V on CNN: http://www.cnn.com/2014/02/26/health/human-factor-lint/

Find out more and read Allison’s blog: www.ViolinforVasculitis.org

“Like” on Facebook to keep up with the V4V Team’s travels: www.facebook.com/violin4vasculitis

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