For Carson McCabe, 17, living with a bleeding disorder limits his daily life. He can't play contact sports, and psychologicaly it disconnects him from others his age. “It's one of those things that …
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WHAT: “Hemophilia: The Musical” — a first-of-its-kind theatrical production written and informed by their unique experiences of life as a young person with a bleeding disorder.
WHEN: 1 p.m. Nov. 12
WHERE: Live stream at www.BreakingThroughHemophilia.com
WHY: Ralston Valley High School senior Carson McCabe is in the cast.
For Carson McCabe, 17, living with a bleeding disorder limits his daily life.
He can't play contact sports, and psychologicaly it disconnects him from others his age.
“It's one of those things that when you tell people, they don't know what it is it separates them from you a little bit,” said McCabe, a senior at Ralston Valley High. “It's always kind of like you're left out. You feel so different from other people and they don't understand your struggle.”
McCabe was diagnosed at birth with hemophilia A, a genetic disorder caused by missing or defective factor VIII, a clotting protein. Approximately 1 in 10,000 is born with hemophilia A. People living with the disease are not able to form blood clots efficiently and are at risk for excessive bleeding from modest injuries, potentially endangering their lives.
“People have trouble grasping the severity of it,” McCabe said. “A lot of people think that you cant get a cut or else it can be dangerous … A common question I get asked is, `if you get a paper cut will you die?' That's a little extreme. The internal bleeding is often more dangerous because it isn't visible.”
This month, McCabe will have the opportunity to connect with other teens from throughout the country who also have hemophilia when he performs in “Hemophilia: The Musical.” The production is written and informed by unique experiences of life as a young person with a bleeding disorder and is sponsored by BioMarin, a global biotechnology company that develops and commercializes innovative therapies for people with serious and life-threatening rare disorders.
“The thing I'm most looking forward to is being part of the community,” McCabe said. “It's great to know other people who are like you.”
The musical will take place at 1 p.m. Nov. 12 at New World Stages in New York and will be live-streamed online at BreakingThroughHemophilia.com.
Prior to the performance, students will participate in the Breaking Through! Musical Theater Intensive, a three-day workshop that includes coaching sessions on the impact of breathing and relaxation on pain management, as well as the psychosocial benefits and therapeutic value of self-expression in the arts. The musical theater workshop and performance are produced in partnership with the Los Angeles-based Believe Limited to help empower the bleeding disorder community through the power of music, performance and the arts.
"Young adults with bleeding disorders need a creative outlet that allows them to express what they are thinking or feeling, and specifically showcase how their lives are impacted," said Patrick James Lynch, Believe Limited CEO and Breaking Through! director. "We were blown away by the talent and thoughtfulness of the applicants. We applaud BioMarin for helping these teens bring their stories and talent to life as we also introduce them to just how beneficial the arts can be for young people affected by chronic illness.”
The twenty-five high school students selected have either hemophilia or another bleeding disorder, are genetic carriers of a bleeding disorder, or are a sibling or child of someone with a bleeding disorder.
"Research has shown us time and again that creative expression and the arts can have a positive and lasting impact on the emotions, attitudes and beliefs of people with health disorders, contributing to greater health and wellness for those individuals," said Jeremy Nobel, M.D., Harvard Medical School faculty member, and founder and president of The Foundation of Art & Healing and UnLonely Project. "Programs like Breaking Through! and productions like 'Hemophilia: The Musical' provide a unique and important opportunity for these young adults to communicate their unique experiences in a collaborative and creative environment.”
McCabe, whose passion is film and screen writing, said singing and dancing aren't his strong suits. But an essay he wrote about life with hemophilia and his audition tape earned him a spot in the production and he is excited to share his story on stage.
“I think that the performing arts and visual arts are meant for storytelling,” McCabe said. “These people with bleeding disorders, they have stories to tell that not many people relate to, I think this play will give lots of opportunity for young people to share their stories.”
Hank Fuchs, M.D., and president of worldwide research and development at BioMarin, said the hope is that these stories stretch farther than just this production and provide learning for the broader community on the connection between artistic expression and wellness.
Watch: Carson McCabe's audition video
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