Hereditary Hemochromatosis – nearly killed me, Joe Metal Cowboy Kurmaskie now I’m asking for your help to drag this, the most common, deadly genetic disorder you’ve probably never heard of, into the light. We can save million from suffering and premature death. It’s on par with diabetes but marginalized by a profit driven medical system because there’s no $$$ in treating it.
Iron Overload Action Network ironitout.org/support
Hey, I’m Joe “Metal Cowboy” Kurmaskie, bestselling author, performer, bicycle travel adventure writer and recently diagnosed with Hereditary Hemochromatosis – Iron Overload.
It’s the most common, life threatening, treatable genetic disorder in the world… that you’ve never heard of! In January 2015, I saved my own life by going in for my annual physical. They’d missed this for six years running – the most common, deadly genetic disorder in the world and I was only 2-3 years away from shopping for a new liver…. it would have been goodbye Detroit, widow a good woman and leave my four sons without a dad, but as luck would have it, a sharp doctor and my big mouth found this mostly silent killer, I was saved, we think, and now I’ve decided to help drag it into the light and save the 1.7 million in the USA who don’t realize there’s a loaded gun to their heads..
Hemingway had it, Steve McQueen too. Beethoven and Patrick Swayze… Got European ancestors? Get yourself checked!
*15 million carriers, 1.7 million with disorder in USA (1 in 200, 1-9 carriers)
*No standard screening procedures in place.
*Body builds up iron stores in organs and tissues.
*75% asymptomatic. Organ damage takes place without you knowing it’s going on.
*Very treatable – normalize iron stores with blood draws/phlebotomy/diet/exercise/avoiding alcohol, raw seafood.
*Early diagnosis and treatment = normal life expectancy. Late diagnosis, not so good. Impotency, arthritis, cirrhosis, liver failure, heart failure, 8 types of cancers. Ever wonder why that family member, friend dropped dead when they seemed so healthy?
Why start an action network?
I’m asymptomatic, an athlete, nondrinker/nonsmoker, who eats right but this disorder has silently gone about scarring my liver and if I had not gotten incredibly lucky would still be undiagnosed. After exhaustive research I realize that the medical establishment is failing or late to the punch on this disorder… and lives are in the balance.
Every two weeks an undiagnosed HH patient walks through every doctor in America’s examination room and walks out no wiser!
I could have just gotten my treatments, complained about the lack of progress to family and friends, but that’s not how I roll. So I’m using my platform to try to make a difference.
How ironitout.org Will Save Lives.
*Publicize disorder/increase overall awareness.
*Lobby for standardized/increased screenings. Submit screening proposals to medical community – CDC, AMA, Red Cross. Demand standard screenings/ferritin tests at annual physicals for those of European background. Proposal a national screening standard on the executive panel – ferritin test put back on the panel.
*Decrease the amount of donatable blood being thrown away by hospitals/blood treatment centers.
*Pressure blood banks, hospitals and Red Cross for all locations to accept HH donations.
*Team up with Red Cross for national marketing campaign – HH patients as super donors to combat blood shortages and save more lives (donors and recipients).
*Educate public that HH patient blood same as standard blood. Donation frequency makes them a win/win for blood banks/Red Cross.
*Pressure Red Cross to offer ferritin screenings to all at risk populations and followup genetic testing. Cost offset/dwarfed by donation increase.
We also hope you’ll help by supporting this crowdfunding campaign for ironitout.org and get family and friends to contribute. Will have no plans to grow into a headquarters with a large staff. We will use funds raised to tackle the listed action projects. And when our goals are accomplished we will end our run, fold up our tent and call it a job well done. Help us make the need for this organization obsolete.
Please make a donation and help us hit our goal for these action projects.