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LEHI — Imagine having an illness or rare disease that doctors have not been able to give a name to or offer treatment for. According to a new documentary, millions of people wander the United States and the world each year in search of a diagnosis for such an illness or a condition.
Doctors like Edward Clark, chairman of pediatrics at the University of Utah School of Medicine, say these people deserve answers.
“Families want to know what this means for other family members, other children, or grandchildren," Clark said. "And with a diagnosis and a cause, we can answer that question for families.”
Clark is an advocate for undiagnosed children and leads a team of doctors and researchers who are trying to crack these cold cases.
“We have data systems, we have genetic analytics, and we have the senior physicians to be able to consider these cases,” he said.
Now, Clark and others in medical care and research are lending their expertise to a documentary called “Undiagnosed: Medical Refugees,” that focuses on the plight of the millions of people who suffer without a diagnosis.
Not knowing what it is, not knowing if you're going to live or die is just an eye-opener. I didn't know that world existed.
–Katia Moritz, documentary creator
The documentary is the brainchild of Katia Moritz, a wife, mother and clinical psychologist who was abruptly introduced to the reality of the undiagnosed after waking up from a standard procedure four years ago.
In August 2010, Moritz underwent a routine endoscopy and woke up with an unknown syndrome. After seeing some of the best specialists, she is still undiagnosed.
“I had this excruciating pain on my sternum and between my shoulder blades," Moritz said. "It was almost like I was impaled by an elephant.”
Moritz went through years of testing and traveling the world in search of a diagnosis. A year ago, she asked friends Crystal Shearman and Nick Miller to produce and direct a documentary on this misunderstood issue. It’s been a labor of love for the Park City filmmakers.
“Not knowing what it is, not knowing if you’re going to live or die is just an eye-opener," Shearman said. "I didn’t know that world existed.”
“Getting to know these families has been the most special part of this journey,” she said.
Chris and Marie Nuccitelli of Lehi have lost two babies to undiagnosed conditions: a boy in 2001 and a girl in 2007. They are proud and excited to be a part of the documentary.
“This film gives a face, it gives a presence to tell the stories that most of us don’t really want to go and stand up in front of a crowd and share,” Marie Nuccitelli said.
The film, new research by National Institutes of Health teams, and the spread of social media are each giving families like the Nuccitelli’s and doctors like Clark hope for finding a diagnosis.
“Families are now taking this information and going on the Internet and using blogs and chat rooms to a remarkably successful degree to be able to find other families who have children with the same conditions,” Clark said.
The film, “Undiagnosed” has also given dozens of these medical refugees a sense of community.
Shearman said that “at the very least these people have been able to come together and say, 'Yes, I’m undiagnosed and there are others out there like me. We may not have the same disease, but we’re going through the same struggle, the same medical odyssey.' It means a lot those patients.”
Six of the families featured in the documentary received some amazing news in the past few weeks. Each of their undiagnosed cases will be studied by teams of doctors and researchers competing for a cash prize if they can diagnose the disease or condition afflicting the family. The competition could take up to three months. Filmmakers hope to show the documentary at next year’s Sundance Film Festival.
Email: solney@ksl.com
Contributing:Dave McCann and Peter Rosen
