I Get Knocked Down… Popular Writer Pedals Back From The Brink With New Story Collection, Founds Iron Overload Action Network

Popular Adventure Writer Pedals Back From The Brink With New Story Collection, Founds Iron Overload Action Network. 

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 and travel adventurer, in the cemetery.

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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 of hospitals and treatments that included weekly bloodletting, Kurmaskie’s back and better than ever. He’s using the launch of his latest book, A Guide To Falling Down in Public, Breakaway Books, June 1st 2016, to cast light on this orphaned disease that affects 1 in 9, but only 2 in 10 know about.  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.

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“We all fall down, physically and metaphorically, but it’s the getting up, with style, courage, grace, or just getting the hell back up that provide the most boisterous, bittersweet and telling stories. It’s an absurd, sublime, twisted and radiant harvest.” said Kurmaskie.

Hereditary hemochromatosis – which causes the body to store dangerous amounts of iron in organs, leading to 12 cancers, liver and heart failure, Alzheimers, diabetes, arthritis and heart attacks – took down Beethoven, Hemingway, Steve McQueen and Patrick Swayze.

“It’s an insidious disease that mimicks so many 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. A time bomb passed generation to generation. In my case, a nondrinker who was only a year or two from liver cirrhosis.”

The good news, caught it in time it’s treatable, without drugs and offers a normal life expectancy. But right now the current system catches a tiny percentage. Many doctors incorrectly state that it’s a rare disease when it’s very common, but rarely diagnosed.

“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.

“The average diagnosis takes 10 years, and every doctor in the world lets a case walk in and back out of the office undetected every 7 days. Wrap your head around that. As an athlete who doesn’t smoke, drink or choke down fast food, I was playing the right cards, and still  it was going to kill me. My tea consumption with meals helped slow the amount of iron I absorbed, or I would have been dead years ago.”

The system missed Kurmaskie’s elevated liver tests for 6 years, until a sharp doctor decided to order simple blood tests, once routine. It was just in time.

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“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. “I nearly widowed my soulmate and left four wonderful sons before we were done  getting into all sorts of good trouble.”

Rather than count himself lucky and move on, Kurmaskie founded ironitout.org – an iron overload action network with four specific projects;

  1. Public Awareness
  2. Nationwide routine early screening
  3. Blood donation acceptance
  4. Medical system education and reform

An early success for ironitout.org, getting the FDA to lift a procedural waiver/ban on HH blood donations.

“We have a population of motivated blood donors – up to 52 pints a year that could save lives while saving the donor’s own –  HH blood is no different then the general population, but for the past 15 years hospitals and blood centers and the Red Cross in the USA threw away our lifesaving blood.” Kurmaskie said. “It made no medical sense. The pressure we put on the FDA forced their hand. A win/win.”

A Guide to Falling Down In Public is the 5th book in Kurmaskie’s Metal Cowboy series and the first in five years. The series has been optioned by Emmy Award Winning producer Chuck Roseberry, for Alsea Entertainment. A film and television series is in the works. Kurmaskie is the author of nine books, a syndicated columnist and performs and speaks around the globe.

For review copies of A Guide To Falling Down in Public  – breakawaybooks@gmail.com

For media interviews contact mtcowboy@teleport.com or 971-544-7752

A year of touring and performances kick off with

  1. A live performance at Powell’s City Of Books downtown location,  Wednesday, May 11th 2016 7pm
  2.  A live performance and film viewing of Breaking Away, Saturday  May 14th 2016 6pm River City Bicycles Portland, Oregon.
  3. A presentation at The Teddy Roosevelt Talks Sunday May 15th 5pm-8pm
  4. A live performance at Broadway Bookstore Tuesday, May 24th 2016 7pm

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5 thoughts on “I Get Knocked Down… Popular Writer Pedals Back From The Brink With New Story Collection, Founds Iron Overload Action Network

  1. Thanks for your efforts to publicise our lot, Joe. I contribute to a UK patient support group on Facebook, run on behalf of the UK Haemochromatosis Society and it’s very clear that the condition is as under-diagnosed here as it is in the USA. I know we spell it differently, but vive la difference, and all that….. Your Network sounds like a great idea.

  2. Well done Joe.
    Thanks for your story and your hard work.
    It’s great to see there’s a global effort to raise awareness of the condition.
    This is the most common genetic condition in Australia and we’re working hard to achieve our vision that No one will suffer harm from haemochromatosis.
    Your friends at Haemochromatosis Australia

  3. joe you are a champion .I was Un /Misdiagnosed by three doctors over a 5 year period despite obvious signs . finally a new addition to the practice saw me and literally within 30 seconds after reading my visit history, made a dignosis ,sent me immediately to get tested .the result was a reading of 4,300 !. my former partner ,has been involved in “spreading the word ” ,to educate people (and GP’s) about HH.we are involved in an annual Art Show in Hobart (Tas .Australia ) which has gone from strength to strenth over recent years due to her dedicated passion to inform people and prevent uneccessary health /mental decline and the resulting disintrication of relationships and Family life.Go well friend ,Cheers Kevin.

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