By: Marisa Gottesman Associate Editor
Imagine slamming your finger in a door. It throbs, blows up and hurts, but eventually the pain and swelling subsides. What if it didn’t for hours or even days? And what if you and your doctors weren’t sure why parts of your body would just begin to swell?
That is the reality for patients with Hereditary Angiodema, or HAE, a rare genetic disease.
Filmmaker Natalie Metzger is taking people through what it is like to live with HAE in her new film “Special Blood.” She co-wrote, directed and produced the film, which she hopes to use to bring awareness to the disease that she and her father have.
Sharing her family’s experience with the disease and several other families across the country, the documentary chronicles what a day in the life of someone with HAE can be like and what is known about the disease.
According to the HAE Association, the disease affects anywhere from 1 in 10,000 people to 1 in 50,000. Symptoms include swelling of various body parts. HAE patients have a defect in the gene that controls a blood protein. That protein is what helps regulate the body’s blood-based systems to help fight disease, inflammatory responses and coagulation.
Born and raised in Boca Raton, her film was recently screened at Boca’s Cinemark Palace 20. The city of Delray Beach is featured in the film as the movie shows Metzger’s family’s story.
She said she knew she wanted to spread the word about HAE for years. She first had the idea to make a movie in 2008, but she was in graduate school and didn’t have the time to dedicate to the project. But, she reached out to the HAE Association and when the timing was right she spent a year filming several families affected by HAE in 2014 and a year in post-production.
Now, the hour-long film is making its way across theaters.
“As a filmmaker, this is the one way I can contribute to give this community a voice, to help tell these stories and to give a face to the disease that is something you would find in a textbook and not something you think a person would have,” she said.
She said filming a documentary was a new experience for her because she is typically shoots music videos, fiction stories and commercials.
“This was my first documentary,” she said. “It was a passion project. It was a new experience and an invigorating one.”
One of the biggest challenges, she said, was working with people not used to being filmed. But for not being actors, she said the families quickly became accustomed to the cameras, crew and opened up about their struggles with HAE.
The film follows Noah, 9, of New Jersey, Kelsie, 16, of Illinois, Lora Moore, who lost a daughter, Lyndon to HAE, and her and her daughter Hillary are HAE patients and Ava, 3, of Los Angeles. Others affected by HAE, including Metzger’s family, and medical professionals are also featured.
“Once we started filming I was kind of surprise with how comfortable they got so quickly,” she said. “How emotional and intimate things got was lovely and unexpected.”
Parents share how they struggle with knowing they passed a disease they have onto their child. There is a 50 percent chance a parent will pass on the disease, according to medical experts.
There are stories of parents who lost a child to HAE due to a swelling attack that caused their child’s throat to close. There are stories of close calls of just making it to the hospital on time. There are stories of people being told by medical professionals it is just a stomach flu causing non-stopping vomiting or an allergy attack causing a limb to swell because the disease isn’t commonly seen by doctors.
There are several medications for treatment and for preventative measures for HAE patients with more products in the pipeline, Metzger said.
One mother in the film commented that now is the best time to have HAE because of the advancements of modern medicine.
Metzger said she has seen a lot of the medical community fill the seats of screenings of Special Blood. She said doctors are asking more questions and finding out the answers to how to treat a patient who may be exhibiting the signs of HAE.
“Hopefully it makes a difference to get patients diagnosed and get proper treatment,” she said.
One thing she said she learned, which is evident throughout the film, is that HAE patients aren’t alone. The stories showcased are often similar. They are sad, filled with frustration, yet hopeful for future medical advancements.
“One of the most powerful things I learned is how common the stories are,” Metzger said.“Even with different backgrounds, ages races the storylines were often the same. I would hear the same stories repeated in different ways and it showed me how close knit the fabric of the community is. You really aren’t alone. People have shared the same experiences.”
By: Marisa Gottesman Associate Editor