Conversations: 'Special Blood' documentary breaks silence on HAE

In directing a feature documentary about Hereditary Angioedema, Natalie Metzger 07C empowers patients.

By Julie Jordan 05C and Natalie Metzger 07C
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EmoryWire guest contributor Julie Jordan 05C caught up with the filmmaker in December during a hectic schedule of screenings.

Selected for the Best Woman Filmmaker Award at the Chandler International Film Festival and chosen as the Official Selection at the Awareness Film Festival, Special Blood follows the lives of four patients with the rare disease, Hereditary Angioedema (HAE), which causes spontaneous swelling in different parts of the body. HAE experts describe the film as “the intersection between human frailty and strength” and “a poignant, no holds barred documentary.”

During a layover to Austria for another screening, Metzger described her inspiration and visual adaptation of Hereditary Angioedema when only the film’s trailer was available to watch. This month the full-length film became available to select streaming services and DVD. Soon it will be released to many other platforms.

Julie Jordan:What inspired you to create a documentary film on Hereditary Angioedema?

Natalie Metzger: The disease runs in my family. When I started meeting patients outside my family and hearing their stories, I was completely inspired. They didn’t have a voice. HAE is such a rare disease. A lot of patients get misdiagnosed. Their friends and family push away from them. They really needed a voice, so I decided to make a documentary about it.

Julie: Do you yourself have the disease?

Natalie: I do, yeah. For me, it’s pretty under control. I have medicine to help treat it. But for many of the people that we followed in the documentary, unfortunately, they don’t have the right treatment or access to it.

Julie: How did you choose the different patients you followed in Special Blood?

Natalie: I wanted to have diversity in race, age and geographical location. We followed Noah, a nine-year-old African American boy in New Jersey. We followed a teenager, Kelsey, in Illinois. We followed a mother named Lora in her forties in Alabama. Then we followed the little girl, Ava, in Los Angeles.

Julie: In the trailer, a mother describes the disease as “evil.” What did she mean?

Natalie: The disease is really unpredictable. It’s really hard to prevent the swelling attacks and to treat them once they happen. Each attack is so different. It can range in severity and location. This mother was thinking about her daughter who had swelling in her throat. That can be dangerous because it cuts off your airway. In this instance, she thought her daughter was fine. She went to school, and she came back from school. She was fine. Then her mom put her to bed, and 15 minutes later, her 12 year-old daughter came bursting out of her bedroom, gasping for air and collapsed and died in her arms. It was this sudden switch that all of a sudden took her daughter from her. That’s what she was referencing when she said it’s an evil disease. HAE has a mind of it’s own.

Julie: Since the film is personal for you, how do you think that affected your work?

Natalie: It certainly led the subjects to open up to me in a more intimate and vulnerable way. I was a fellow patient. But it also made it difficult to get perspective. I had to bring in an outside editor, because I knew that I couldn’t get that perspective without an outside eye. I also include a few of my family members in it. I included my father who has it, and he addresses the feelings of guilt that happen when you pass on a genetic disease. I think that that was a really important part of the puzzle as a subplot.

Natalie Metzger

Natalie Metzger 07C directing the documentary Special Blood

Robert Allaire

Julie: When did you first start working on films?

Natalie: I’ve been working on films since I was at Emory. I was taking a class with Anna Leo in the Dance Department. As part of her choreography class, we had to do a dance film project. I fell in love with it. From there, I just continued making films after I graduated.

Julie: And Special Blood was something you wanted to do for a while?

Natalie: Yeah, I actually had the idea back in 2008, and I emailed the president of the U.S. Hereditary Angioedema Association. He said, “I love the idea; how can we help?” I was just starting grad school and didn’t have much time outside of it. Once I graduated with my MFA, I began working on it.

Julie: What do you think is unique about your directing?

Natalie: Having the background in dance and choreography has given me a really unique approach to filmmaking. The way that I frame, and the way that I use movement—both in camera movement and also in the movement of the subjects—is very specific. I really love the body and body language. When I’m directing, there is specific, meticulous detail to how actors are holding their bodies. That can really influence a character.

Julie: That makes sense to me having taken a little bit of dance at Emory as well. How did you try to show the voicelessness and isolation that happen with HAE in the film?

Natalie: With each patient it’s a little bit different. If Kelsey, the teenager that we followed, goes to the hospital with her stomach swollen, they’ll think that she’s pregnant. She says it’s so frustrating when you bring all this information to the doctors, and they just ignore it. So when we filmed her, it was January in Illinois. It was the perfect backdrop, because there were these long, large swaths of snow, and these barren trees. We were able to capture these moments of her trudging through the snow with complete vastness around her, and she just feels like this isolated figure and silhouette walking amongst these barren trees. But that is just one of the stories.

Julie: And that really contrasts with this little boy running and being very active, despite having the disease.

Natalie: Exactly. That’s one of the reasons why I really wanted to cast Noah. Kelsey’s story is kind of a sad one where she’s struggling to overcome these obstacles, but Noah is the exact opposite. He is absolute, pure inspiration. He’s like: “I am not going to let this stop me in any way.” He does a ton of sports. He’s just this figure of hope for the entire community.

I think that’s really the guiding principle behind the generational gap that has happened, because everyone that grew up with HAE before there was medicine available has this kind of grin and bare it attitude, and they feel like they’ve been beaten down. The younger generation, especially the kids right now—because they’ve only known a world where there is treatment—don’t see an issue with having the disease. So there is this generational gap that has happened. Noah definitely has the forefront of that.

Special Blood - Official Trailer

Julie: Could you talk about the generational differences with the drugs that came out and where you fall along that spectrum?

Natalie: I’m right on the edge. What’s interesting is that when I was at Emory, there still wasn’t any treatment. I was just getting started on some clinical drug trials and exploring new medications. Oftentimes I would sign up for a trial and get the placebo. I was in and out of the hospital a lot when I was at Emory.

In grad school, I ended up having medication, and it completely changed my experience. Now, I wouldn’t be able to be a filmmaker and be on set for 14 hours a day and on my feet running around if I didn’t have the medicine that is now available. In many ways, the new treatments have really changed my life. I do think I have the kids’ attitude of, “Well, I’m not going to let it get me down.” But there was a period of time where it did get me down a little bit, and I was struggling. But it’s been a new world since the treatments have come about.

Julie: I know that Hereditary Angioedema involves a genetic defect in the blood, and you’ve titled your film Special Blood. Why did you choose that title?

Natalie: That title actually came from one of the mothers in the film. The little 5 year-old girl that we followed in Los Angeles is Ava. The dad passed it on, and the mother told me, “I don’t know how to explain to a 5 year-old: You have an enzyme deficiency in your blood, and it’s the C1 something inhibitor that’s low; how do I explain to this little girl?”

The way that she was able to explain it was to tell Ava: You and daddy share special blood; so your blood is a little bit different than everyone else’s, and it’s special; because of that, we have to give you this kind of medicine to make sure that your special blood is taken care of; me and your brother have normal blood, and you guys have special blood.

I just thought that that was so sweet and so cute. I just stole it for the title.

Julie Jordan

Julie Jordan 05C

Julie: And it puts a positive spin on things, too.

Natalie: Yeah, absolutely. Ava’s mom is great. She really tries to make it so that Ava isn’t embarrassed about her disease but empowered to be a strong woman that can do whatever she wants. That’s such a great attitude to have, especially for these kids that are growing up having medication on hand. There’s really nothing that can stop them.

Julie: What are you most proud of about Special Blood?

Natalie: It’s the responses I get after the movie screenings. There was one woman who stood up and said: “I don’t think any of my friends or family here actually understood what I was going through or why I was feeling the way I was until now.” And she said: “I finally feel understood.” I don’t know that I’ll ever be able to make a project that has such a big impact on people in such a unique way. I think this movie in particular has changed people in a way, and you don’t really get that very often.

Julie: What do you most hope viewers will gain by watching Special Blood?

Natalie: It’s raising awareness to help save lives, and it’s giving voice to this group of patients that really haven’t had a voice for so long. But Special Blood is really an underdog story, which everyone can relate to.

Julie: Sounds awesome. Thank you so much for speaking with me! I can’t wait to see the full movie!  

Special Blood is now available for download on iTunesAmazonGoogle Play, and DVD, and will soon be coming to many other platforms. It has screened theatrically in over 30 cities around the world.

What’s next for Metzger? She is now working on developing her sci-fi thriller script Immortal. It won the gold prize at the PAGE Awards. She plans to dive into more narrative work that deals with the body at a more futuristic level.

Editor’s Note: Read more about Metzger and her career on IMDB. Author Julie Jordan is a public health educator in health communication in Atlanta. Her background is medical education communication with a master’s degree in marketing communication. Jordan’s Emory undergraduate major was psychology, but her elective classes in dance were especially inspiring.