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Nephew of Reggae legend Bob Marley takes on role as rare-disease spokesman

Charles Mattocks has appeared on television as the Poor Chef promoting healthy eating.
Published Dec. 23, 2016

TAMPA — Charles Mattocks may never have as many fans as his reggae superstar uncle Bob Marley, but the followers he does have are every bit as grateful for the message Mattocks spreads.

Early this year, Mattocks premiered his documentary Trial by Fire about a little-known disease called complex regional pain syndrome, which causes nerves to misfire and send the brain signals of excruciating pain. It can affect a limb or the entire body.

Mattocks hoped the film would position him as an international spokesperson for CRPS sufferers, one of whom is his mother — the documentary's star, Constance Marley of Ocala, sister of the late entertainer.

Mission accomplished.

Trial by Fire is showing locally through the end of December on PBS affiliate WEDU-TV. Throughout 2016, the documentary has won awards at film festivals around the world and Mattocks is talking about the disease at medical conferences in places like New Orleans, Seattle, Amsterdam and Israel.

"This has been a satisfying year in terms of this film's outreach," said Mattocks, a New York native who moved to Tampa a decade ago. "It's doing what I wanted it to do — let people know this disease is real and let those who have it know they are not alone."

Mattocks said an estimated 200,000 people in the United States suffer from CRPS but it draws relatively little in donations for research and education.

It is nicknamed the "suicide disease" for the patients who choose to take their own lives rather than endure the constant pain. CRPS is so little known that as many as 5 million people worldwide may have it but were never diagnosed, Mattocks said.

Some are called crazy or liars seeking pills.

Jerissa Bluemer of Belleair Bluffs has experienced that doubt.

CRPS usually develops after physical trauma although specific triggers remain unknown.

Bluemer, 35, was victim of an assault in 2011 that left her with a herniated disc. Burning in her right arm and leg followed and then pain took over her body. The once active mother of two was bedridden.

Doctors called her a hypochondriac. She sought psychological help.

Then in September, a pain management physician in Clearwater diagnosed her with CRPS and handed her a copy of Trial by Fire.

"It was remarkable," Bluemer said. "Before I watched it, I felt so alone. The movie lent me a voice so my friends and family could know what I was going through."

There is a CRPS Treatment Center and Research Institute on Busch Boulevard, one of the few centers of its kind in the world.

Director Anthony Kirkpatrick has said that without timely treatment, CRPS can lead to paralysis and in rare cases, death.

That is why Mattocks felt compelled to make Trial By Fire.

Mattocks' career also includes the title role in the Golden Globe-nominated 1996 television film The Summer of Ben Tyler, a rap album produced under the guidance of LL Cool J, and appearances as The Poor Chef promoting ways to eat healthy on a budget on television programs such as The Dr. Oz Show and The Today Show.

But he considers the Trial by Fire to be his greatest accomplishment.

"He is remarkable," patient Bluemer said. "He is fighting for people with this condition and letting everyone know it is real. The mental anguish of being dismissed by doctors and friends and family is harmful, also."

Bluemer's CRPS pain is diminishing thanks to infusions of ketamine.

The sedative has not worked for Mattocks' mother so they are seeking other remedies.

When Mattocks does find permanent relief for his mother, he promises to keep spreading the word about CRPS.

"This is not just about my mom," Mattocks said. "The fight began with her but will not end with her. This movement is something I am passionate about."

Contact Paul Guzzo at pguzzo@tampabay.com or (813) 226-3394. Follow @PGuzzoTimes.

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