Short film provides ‘window into resilience’ of 2 living with EB
Drug developer behind 6-minute film says it aims to raise awareness
A new six-minute film called “Living Between Pain and Hope” spotlights the impact that living with epidermolysis bullosa (EB) has on two people with the fragile skin condition.
The film shares the experiences of a pair of young adults living on different continents but with the same rare disease: Abrar, a 30-year-old author and social media influencer from Saudi Arabia, and Michael, a 31-year-old social media content creator and life coach from Italy, both of whom have EB.
The two share details of their lives, from what they first think about when they wake up, to the issues they face and the symptoms they have, to the routines they follow, and how they are involved in spreading awareness.
“This is not just a film, it is a window into resilience, pain, and hope, and allows broader audiences, from policymakers to the public, to see the person, not just the diagnosis,” according to a press release from Chiesi Global Rare Diseases, which paid for and presented the film.
Film is part of series called The Next Frontier on biotech in rare diseases
Chiesi markets the therapy Filsuvez (birch triterpenes), which is approved in the U.S. and European Union to help promote healing of certain wounds in people with dystrophic epidermolysis bullosa (DEB) or junctional epidermolysis bullosa (JEB). Like other forms of epidermolysis bullosa, these genetic disorders are marked by fragile skin that’s prone to wounds that don’t heal easily, or well.
The new film was created as part of a series called The Next Frontier, which includes more than a dozen films showcasing how biotechnology can help address the challenges of the modern era. The series is presented by the Biotechnology Innovation Organization (BIO) and produced by BBC Storyworks Commercial Productions.
Individuals [living with rare diseases] possess unique and powerful insights that are essential to understanding and addressing the challenges they face.
Stuart Siedman, Chiesi’s vice president of global patient advocacy, said the company hopes the film with help raise awareness.
“Our commitment to the rare disease community is unwavering, and a core element of this is actively amplifying the voices of those living with a rare disease,” Siedman said. “We recognize that these individuals possess unique and powerful insights that are essential to understanding and addressing the challenges they face.”
According to Chiesi, the voices of people with rare diseases are often absent from what the release called “critical conversations for these communities.” The company said it is committed to helping people with rare diseases share their stories, which can “foster awareness, influence policy, accelerate diagnosis, and shape access to treatment.”
John F. Crowley, president and CEO of BIO, said “revolutionary thinking from biotechnology’s scientists, innovators, and leaders” is essential for finding solutions to “society’s modern-day challenges.”
The film debuted at the BIO International Convention, held in June in Boston.
“This amazing series not only highlights biotech stories, it also instills in viewers one of the most powerful human emotions: hope,” Crowley said. “Hope first allows us to believe and then to act, helping to power the biotechnology revolution as it reimagines the potential and possibilities for people and communities everywhere.”
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