Documentary filmmaker Charles Mattocks hopes to inspire a social movement to help people suffering from Complex Regional Pain Syndrome and other rare diseases.
Mattocks — who is the nephew of famed reggae artist Bob Marley — has produced “Trial by Fire,” a documentary that tells the story of his mother’s eight-year struggle with Complex Regional Pain Syndrome, called CRPS for short.
It’s a rare condition that is not widely understood, Mattocks said.
“I was totally confused, really, on what this thing was,” Mattocks said. “I used to tell my mother, ‘Mom, you’ve got to walk it off. You’ve got to go to the gym.’”
(B.C. Manion/Staff Photo)
Mattocks said while he didn’t initially know what CRPS was, as he delved into the topic and observed his mom, he knew something must be done to give people suffering from the condition a voice.
“It’s agony,” Mattocks said.
The key symptom is prolonged pain that may be constant and, in some people, extremely uncomfortable or severe, according to information published on the National Institute of Neurological Disorders and Stroke’s website.
The pain can spread through the body, the pain can travel from limb to limb and there often is increased sensitivity in the affected area, such that even light touch or contact is painful, the website says.
People with CRPS also experience constant or intermittent changes in temperature, skin color, and swelling of the affected limb, the website says.
Other common features of CRPS include:
- Changes in skin texture
- Abnormal sweating
- Changes in nail and hair growth patterns
- Stiffness in affected joints
- Problems coordinating muscle movement
- Abnormal movement in the affected limb
Fifteen-year-old Natalia Rijos, who is also featured in the film, is quite familiar with CRPS.
There’s a clear line of demarcation in her life.
One day, she was a typical 12-year-old, enjoying the normal activities of girls her age.
But, that changed on Dec. 15, 2012.
That was the day she was horsing around with her dad, showing off some karate moves.
Her dad grabbed her leg, she began to fall, and as she went to brace herself from the fall, she injured her left hand.
Initially, her mom, Myrna Concepcion, thought it was just a sprain.
But, the girl’s hand became swollen and discolored, and didn’t heal properly.
In ensuing months, the pain became unbearable and doctors couldn’t figure out what was wrong.
It took three months to get a diagnosis.
According to Concepcion, in one sense, the family was lucky. In can sometimes take years to get a proper diagnosis.
In Rijos’ case, the situation was complicated by an accident. She suffered additional injuries when she was riding in a school bus and a car plowed into it.
The teenager, who lives with her family in Lutz, has been living out of wheelchair for two years. She is fed through a feeding tube.
Rijos attends Steinbrenner High for some classes, but is educated by telephone at home for other classes.
People with CRPS not only suffer with the pain, but they also struggle with the failure of others to understand their condition, Concepcion said.
People tend to discount the pain, Concepcion said. They think they are exaggerating, or that the problem is just psychological, she said.
That’s why the disease is sometimes called the “suicide disease,” Rijos said. Some with CRPS can no longer bear the pain, lose hope that their condition will ever improve, and they choose to end their lives, she said.
Rijos compared the pain she experiences to someone placing their hand on a hot burner and leaving it there.
It’s like having a pain switch that never goes off, her mother said.
The documentary has been accepted by six film festivals, and recently won ‘best director’ and ‘most impactful topic’ in a documentary at the Hollywood Florida Film Festival.
The Tampa Bay area is fortunate, because there are two doctors who treat patients with CRPS, Mattocks said, noting his documentary also includes a Land O’ Lakes woman in her 40s who is suffering from the disease.
Increased awareness of CRPS is needed, not only by the general public, but also by the medical community, Mattock said.
“I know people who live in Long Island, who have to go to Philly for treatment,” he said.
Mattocks said that CRPS is just one of the rare conditions that people face, without anyone giving voice to their struggles.
“There are over 350 million worldwide who suffer from rare disease. If you think about it, if there is no Ice Bucket Challenge, how can these people have a voice? It’s not just about CRPS. “It’s about rare disease in general,” Mattocks said.
To that end, he plans to be an advocate and hopes to inspire others.
“I believe that this is, in a sense, divine,” he said, noting additional screenings of “Trial by Fire” are expected.
“We have several distribution offers on the table,” Mattocks said.
Published March 2, 2016