Hemophilia the Musical

Foundation Posts, Live Events

Watch how the production came about.
(note: auditions have closed)

Watch how the musical.

By Madeleine Foley | mfoley@artandhealing.org
Communications, The UnLonely Project

When the 25 high schoolers took the stage on Nov. 12 at Off-Broadway’s New World Stages, the audience exploded into applause. It wasn’t just that the teenagers had, in three days, mastered an hour-long, original musical. Nor was it just that the teenagers had come to New York City from around the country, and had formed a visible community in that short amount of time. Every performer on the stage that afternoon suffered from or was a carrier for a bleeding disorder. The music and lines they sang and recited were part of Hemophilia: The Musical, whose script and lyrics were based on the students’ personal essays on managing their health conditions. The audience was applauding the students’ perseverance, their strength, as much as their skill.

Hemophilia: The Musical creator and director Patrick Lynch understands the loneliness and isolation that can come from bleeding disorders, a group of genetic disorders which are characterized by an inability to form a blood clot. Lynch himself has severe hemophilia A; his brother, Adam, died at 18 from a hemophilia-related hemorrhage. At the musical’s post-performance talk-back event, hosted by the Foundation for Art & Healing founder Dr. Jeremy Nobel, Lynch explained that he had wanted to break through the stigma of having what’s considered an “orphan disease.”

“I wanted to find a way to talk about hemophilia in a format that wasn’t sad or scary or inaccessible,” said Lynch. “Musical theater opened the door for understanding. It made it relatable, even to an audience with different levels of knowledge about orphan diseases.”

“Orphan diseases” are defined by the FDA as conditions that affect fewer than 200,000 people within the country. Hemophilia, estimated to affect only around 400,000 people worldwide, is one such condition. The loneliness that often accompanies orphan diseases is two-fold: the lack of public understanding around a lesser-known disease can lead to misunderstandings about the actual limitations of the condition. And often, treatment for orphan diseases is under-funded, and thus, less available.

BioMarin, a California-based pharmaceuticals company, has built a business on developing treatments for rare genetic diseases, often called “orphan drugs.” Their ethos centers on creating drugs that make big impacts on small patient populations. And it was BioMarin at the heart of Hemophilia: The Musical, providing the funding and marketing support. The performance was even live-streamed at their offices, where they are currently developing an investigational drug for Hemophilia A, the most common form of hemophilia.  

Many of Hemophilia: The Musical’s lines spoke directly to the struggle of navigating high school with a serious illness. The students worried that talking openly with peers about their health would brand them as different, as “sick.” They lamented the time spent in hospitals, out of school, away from sports or social events. The loneliness, the social isolation – these experiences were part of having a bleeding disorder, too. In one scene, structured as a high energy quiz show, the actors combatted the (many) misconceptions about bleeding disorders. Yes, girls can have bleeding disorders, they shouted. No, a paper cut isn’t an emergency situation. The students laughed and cheered. For once, it was their stories being centered.

When Dr. Nobel asked the participants at the talk-back event about who had been excited to meet other people with bleeding disorders, the entire cast raised their hands. Though many of the students were involved with some sort of bleeding disorder network back home, none had spent so much concentrated time or had been so artistically involved, with such a large group. Hannah James, from Prairieville, Louisiana, fought back tears as she explained how life-changing the experience of working creatively with her peers had been. “They’re my new family,” she said.

JonCarlo Ley, a high school senior from Baltimore, said the cast definitely planned on staying in contact after the show ended. They were all in a group text, he said, smiling. They had built a musical together. Of course, they were going to stay lifelong friends.

Listen Now!

On the radio: Jeremy Nobel, MD, MPH, Founder and President of The Foundation for Art & Healing, joins host Janeane Bernstein on KUCI 88.9fm

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