What exactly is Hereditary Angiodema?
Both Nikia Davis and her 9-year-old son, Noah Davis-Logan, of Minotola, suffer from this rare disease. Three generations of her family have been affected by this disease. Her mother has it, she has it, and so does her young son.
“You can start to swell anywhere in your body at any time,” said Natalie Metzger, documentary filmmaker. “It can be just kind of annoying, but if it gets into the stomach or throat, you can suffocate.”
Just watch “The Nutty Professor,” suggested Nikia, who is a nurse case manager at Kennedy University Hospital in Washington Township. And you’ll get the gist.
But it’s different for everybody, she added. According to the US Hereditary Angiodema Association, a patient advocacy group, the disease causes sudden and unpredictable attacks of extreme swelling in different parts of the body.
“Some people get a rash first. But for me, literally as I’m driving, my hand can swell up. It gets so big you get blisters. It hurts to use that extremity,” Nikia said.
Since Metzger, of California, also suffers from the rare disease— although she has a mild form of it— she felt it was time to give the disease the name it deserves. Rare diseases like Hereditary Angiodema are often overlooked in the medical community, so Metzger decided to follow five patients as they fight to live normal lives.
Her documentary, called “Special Blood,” is “a passion project of mine,” she said. “I don’t usually make documentaries.”
Luckily, there are treatments for these patients now, Nikia said.
“It’s getting better, it was worse for me,” she said.
But those medications and treatments have only been on the market for the last four years or so, Metzger said. So meeting Noah and his family and getting their stories out there could help keep this disease on the research list.