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Revisiting Hereditary Angioedema Documentary ‘Special Blood’

Director and HAE patient Natalie Metzger on putting faces to the rare disease.

Natalie Metzger, director of hereditary angioedema documentary "Special Blood"
Director Natalie Metzger at work

A quick glance at Natalie Metzger’s page at the Internet Movie Database reveals that the she is one filmmaker who doesn’t put limits on herself. Her lengthy list of projects includes comedies, dramas, thrillers and music videos. Metzger is interested in finding a compelling story, whatever it may be.

For her directorial debut, she didn’t have to look far to find one. “Special Blood” is an intimate look at the day-to-day challenges faced by people living with hereditary angioedema (HAE), a rare and sometimes deadly condition that Metzger herself was born with. The condition is caused by a defect in a gene that controls a blood protein and can result in painful swelling in different parts of the body. HAE affects 1 in 10,000 to 1 in 50,000 people. One of Metzger’s reasons for making the film was to raise awareness of a serious condition that is often off the radar for many in the medical community. 

“The first goal was to shine a light on this disease that no one really was talking about or had heard of and to give the patients a voice, to let them feel heard, to share their stories,” Metzger told Vita in a phone interview.

Metzger’s passion for sharing those stories is evident in the years-long journey from the time she decided to make the documentary to its 2016 debut. Metzger said she spent a year settling on the right subjects for her film “to show the full scope of HAE.”

And once she had those subjects, filming across the United States, editing and post-production and promotion of the film took another three years in total. But the end result made all the time and effort worth it, as the HAE community responded enthusiastically to the film. Metzger recalls the jitters she felt when she first screened the film for an audience of patients and medical professionals at the 2016 HAE Global Conference in Madrid.

“During the screening it was just dead silent the entire time,” she remembered. “So I was convinced that everyone was not connecting to it or not liking it. At the end, the credits rolled and there was a two-minute standing ovation.”

Patients continued to show their support for the film by selling out screenings across the country. Some groups made it a point to bring in doctors and nurses so that they could better understand what it’s like to be a person living with HAE. Since the disease is rare, HAE patients can go lengthy amounts of time without a proper diagnosis. Metzger says the film is living up to her vision for it by educating the public.

“Hopefully it may have saved a life or prevented someone from going for years without a diagnosis,” she said.

CSL Behring, the fifth-largest biotechnology company in the world, provided support for the making of “Special Blood.” The company is screening the film for employees next week to mark HAE Day. “Special Blood” is currently available for streaming on Amazon and other sites.

For more about filmmaker Natalie Metzger, visit her website or follow her on Instagram or Twitter.