‘Hemophilia: The Musical’ Lets Teens Confront Their Illness, and Educate Others, via Song

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
hemophilia, musical theater

The workshop and production process over, it was curtains up for “Hemophilia: The Musical,” a unique theatrical event starring high school students affected by bleeding disorders.

Performed at New World Stages in New York City on Nov. 12, the premier Broadway-style production rounded out a three-day theater and arts program for the bleeding disorders community. Produced by Believe Limited and sponsored by BioMarin Pharmaceutical, the live-streamed performance’s recording is available here.

Called Breaking Through! Musical Theater Intensive, the ongoing program includes a workshop and performance aimed at raising awareness of the healing and therapeutic power of the arts and self-expression. Twenty-five students were selected from among applicants to “Hemophilia.”

The Foundation for Art & Healing, a production and workshop program coordinator, will study the experience’s effect on the teens, particularly whether participation boosted confidence, promoted connections with fellow participants, and helped with disease management. The hope is that results will underscore the value of such programs.

“There is an important connection between creative expression and wellness for people living with chronic conditions like hemophilia, which can be particularly isolating,” Jeremy Nobel, founder and president of the foundation’s Unlonely Project, said in a news release. 

Patrick James Lynch, chief executive officer of Believe Limited and director of Breaking Through!, called the musical, which will be featured in bleeding disorder educational materials, a defining moment for the young performers.

“Together, these 25 teens stood on stage and sang about real and relatable experiences for young people who live with bleeding disorders,” he said. “Through music, they were able to share what their lives are like with a broader audience and connect with each other and others in their community in a unique way.”

The six-song musical featured teens from around the U.S., and the psychosocial and physical struggles related to bleeding disorders. Ultimately, the young adults learn how to embrace and be their best selves. The production’s music and lyrics were developed and inspired by cast members’ experiences.

Hank Fuchs, president of worldwide research and development at BioMarin, called the musical a shining example of what can happen when creative outlets are given to youths with bleeding disorders, who otherwise might seek less-productive ways of self-expression and group participation.

“Being part of this pioneering effort is consistent with who we are as a company and our focus on improving the quality of life for people living with rare disease,” Fuchs said.

Breakout sessions during the workshop covered such topics as the impact of breathing and relaxation on pain management, the psychosocial benefits of communication, and the therapeutic value of artistic self-expression.

Bleeding disorders are a group of conditions in which blood cannot clot properly. Affecting mostly males, hemophilia is the best-known bleeding disorder, although it’s relatively rare.

The Foundation for Art & Healing’s mission is to enhance awareness of the relationship between creative arts expression and health. The organization’s Unlonely Project is designed to broaden knowledge of the physical and mental health consequences of loneliness, and to promote creative arts-based approaches to burden reduction.

Believe Limited, a Los Angeles-based digital content agency, creates content and live events for individuals affected by bleeding disorders.

BioMarin, which also live-streamed the musical, is engaged in developing and commercializing innovative biopharmaceuticals for rare genetic diseases.