Most people have never heard of hereditary angioedema, an inherited blood disorder in which victims suffer periodic attacks of swelling and discomfort. Not only is it rare, affecting only one in 10,000 to 50,000, but its symptoms are frequently misdiagnosed. It’s a confounding and potentially fatal condition, but not an untreatable one – if properly diagnosed.
In 2008, award-winning filmmaker Natalie Metzger began considering a documentary about HAE. It wasn’t an impulsive decision, but she knew that she could bring a certain personal insight because she suffers from the disorder.
Metzger wanted to establish an objective standpoint by focusing on four HAE sufferers other than herself: Ava Levy, Noah Davis-Logan, Kelsie Neahring and Lora Moore. The film looks at their lives, their families and how they’ve dealt with HAE.
“This was one of the most important things to me in the process of making the film,” Metzger said. “I wanted to tell an underdog story that was entertaining as well as educational, something that people could relate to on a universal level. I wanted to give a human face to this crazy disease and not dwell too much on the tragedies, but instead to show people conquering adversity together.”
For more than a year, Metzger has been touring with “Special Blood” to film festivals and special screenings around the world, including one last October at the The Grand 18 in Winston-Salem, a screening organized by Winston-Salem resident Kelly Graves, also a sufferer of HAE.
As Metzger related during the post-screening discussion at The Grand 18, “It’s all about raising awareness, one screening at a time,” Metzger said.
The film’s recent release on DVD and Video On Demand on the website will give it an even larger audience, further raising awareness.
Metzger cowrote the screenplay with her fiance Robert Allaire, who also composed the film’s score. Allaire counts Cliff Martinez, Ennio Morricone and Trent Reznor as composers who have inspired him, and cites John Williams’ Oscar-nominated score for the 1991 film, “JFK” as a special inspiration for “Special Blood.” He wanted it to accentuate and augment the story, but not overwhelm it.
“Special Blood” won awards for Best Feature Documentary from the California Women’s Film Festival, Best Woman Filmmaker from the Chandler International Film Festival and the Best Healthcare Documentary from the Kashmir International Film Festival. In addition to festivals, Metzger said “Special Blood” has also been screened at hospitals and medical conventions in 30 cities the world over.
“The most rewarding part for me was getting to meet the patients from the audience to hear how much the film impacted them,” she said. “One woman who wasn’t a patient, but sister had the disease, came to me crying afterward. She said that even though she had known about the disease for more than 50 years, she never fully understood what life was like for her sister until seeing the film.”
One of Metzger’s main intentions with the film was not to condemn or criticize the health care professionals who have misdiagnosed patients with HAE. It’s happened to her more than once, and although it can be frustrating – and, at worst, potentially fatal – the film’s the intent was always to inform, to put a human face on the disease. To that end, Metzger believes she has succeeded.
She said they have often had doctors in the audience, who had only heard about the disease in medical school, before there was any treatment in the US.
“Hopefully, this means that more patients will get diagnosed in a timely manner and that diagnosed patients will receive the proper treatment,” Metzger said. “Now that the film is available, many patients are getting the DVD and sharing it with their local hospitals and medical professionals to help raise awareness.”
Metzger is happy to report that currently she’s in good health and just started a new clinical drug trial that she loves. Metzger may have completed “Special Blood,” but her work is not finished. Their focus now is having more targeted screenings in hospitals and medical schools. Metzger said she has already heard stories of people getting tested and diagnosed because they were encouraged to do so after seeing the film.
“My goal is to get the number of years between onset of symptoms and diagnosis to decrease,” she states. “Right now, it is nine years on average in the US. I’m hoping we can get that number down to less than one.”
The official “Special Blood” website is specialblood.com.