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Alpinist Jeff Lowe's legacy extends beyond the world of climbing.
A documentary is being produced about the Ogden native's resilience in the face of a life-robbing neurological disorder similar to amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. In addition, Lowe will appear in a Utah-made film "Undiagnosed: Medical Refugees" about the fear and isolation felt by millions of people worldwide living with undiagnosed diseases.
"He's been sick for 13 years and is now on hospice. We don't know why he's dying. But he is going to die, and he will die undiagnosed," said the film's creator and co-director, Katia Moritz, a psychologist in Park City.
Moritz made the movie, motivated by her own experience with undiagnosed illness, to give an identity and voice to the countless, faceless men, women and children stricken by rare, ill-defined diseases. She hopes it will also generate support for solutions, such as creating a database, or a federated group of databases, for storing valuable clinical information on these patients.
"When undiagnosed patients die, their information dies with them. What if this illness could lead to a diagnosis in someone else, or lead to clues for treating other diseases?" the filmmaker asks.
But first, Moritz and her Park City-based producer, Crystal Shearman, have to finish the movie. They've launched a Kickstarter crowdfunding campaign at http://www.UndiagnosedFilm.com to raise $150,000 to have the film professionally edited.
Moritz has more than 100 hours of footage of Lowe before he got sick. She and a camera crew head to Boulder, Colo., next week to interview Lowe one last time, and they have permission to film his funeral.
His story is one of several featured, but it stands out for the name recognition he brings. Most sufferers of undiagnosed disease live and die without recognition, said Moritz.
Their illness isn't tallied in public health surveys. They have no patient support group to lean on. Lacking a label or category, they are often unintentionally abandoned by the health care system, and are sometimes "fired" by doctors who blame their health woes on mental illness, said Moritz.
"Many times these patients end up with psychiatric diagnoses, even though they don't have those symptoms," she said. "The doctors think, 'It must be all in your head.'"
Moritz has lived through it. About four years ago she woke up from a routine colon cancer screening with a "crazy set" of neurological symptoms.
She's been to dozens of specialists at leading hospitals, including the Mayo Clinic and the Cleveland Clinic, and no one can tell her what's wrong.
"I was sick in front of them with symptoms verifiable with tests. They'd say, 'You're definitely sick but we don't know the name; we don't know what it is,'" she said.
Moritz doesn't like to talk about her illness. She lives with unexplainable fevers, neuromuscular pain and numbness. On bad days, she can barely walk or swallow.
"My feeling is there are people who are much sicker than me. But I would like people to study my disease because I want that information to be of use for someone else, including my children," she said.
Edward Clark, pediatrics chairman at University of Utah Health Care and chief medical officer at Intermountain Healthcare's Primary Children's Hospital, appears briefly in the movie's trailer.
It's an important film about a significant and scientifically compelling group of patients, he said.
The U. applied to the National Institutes of Health to become part of a national Undiagnosed Disease Network: academic medical centers handpicked to provide answers to patients with rare, mysterious conditions that elude diagnosis.
"We didn't get it," Clark said he just learned, but the U. will continue pursuing its own rare disease database in connection with the Utah Genome Project. "We've been collecting these data for years," he said.
Moritz would like to live to see a national data pool created. Currently, though, most patients' information is discarded.
"I interviewed a mom whose son died and she asked her doctor to take his file and use it for future studies. He told her, 'I don't have a way to file this. There's no diagnosis to file it under,'" she said. "The whole point of this movie is to say, 'Let's not turn our backs on these people,' because that's how they feel."