Hemochromatosis, the world’s most common deadly genetic disease – that few have ever heard of – tried to put Joe Kurmaskie, AKA The Metal Cowboy, a popular writer, contributor to Cycling Utah and travel adventurer, in the cemetery.
But it’s hard to kill a man who’s pedaled 200,000 miles on five continents; out sprinted charging elephants in Botswana, been hit by the smallest car in Ireland, and lost all his possessions playing darts in an Outback bar… only to win them back in a mountain bike race.
Following a year a treatments that included weekly bloodletting, Kurmaskie’s back and using the launch of his latest book, A Guide To Falling Down in Public, to cast light on this orphaned disease that affects 1 in 9. Stories in the new book, told in Kurmaskie’s Mark Twain meets David Sedaris voice, highlight the fragility of life and the resilience of the human spirit in motion around the world.
“We all fall down, physically and metaphorically, but it’s the getting up, with style, courage, grace that provide the most boisterous, bittersweet and telling stories,” said Kurmaskie.
Hereditary hemochromatosis – which causes the body to store dangerous amounts of iron in organs can lead to 12 cancers, liver and heart failure, Alzheimers, diabetes, arthritis and heart attacks – killing Beethoven, Hemingway, Steve McQueen and Patrick Swayze.
“It’s an insidious disease mirroring vague symptoms of middle age; fatigue, headaches, joint pain, impotence, but simple screening to detect it was removed from routine blood work in the 1990s, for cost savings by a profit driven medical industry.” Kurmaskie said. “Since only 1 in 4 get early symptoms, it’s a nearly silent killer.”
The good news? Caught it in time it’s treatable, without drugs and offers a normal life expectancy.
“We could prevent upwards of 20 percent of cancers, heart attacks, liver failures, diabetes if we got serious about diagnosing and preventing iron overload. The tactical error this disease made was… not killing me,” noted Kurmaskie.
In Kurmaskie’s case, the combination of a healthy lifestyle, sharp doctor, regular physicals, luck and tea consumption saved his life.
“This disease should not be left to luck and scavenger hunting style medicine. The loss of life and suffering from chronic illness is too great.” Kurmaskie noted.
Rather than count himself lucky and move on, Kurmaskie founded ironitout.org – an iron overload action network with four specific projects; public awareness, nationwide routine early screening, blood donation acceptance and medical system education and reform.
A Guide to Falling Down In Public is the 5th book in Kurmaskie’s Metal Cowboy series. Find more info at www.metalcowboy.com
