It’s the most common, life threatening, treatable genetic disorder in the world… that you’ve never heard of!
Hemingway had it, Steve McQueen too. Beethoven and Patrick Swayze… 1 in 9 are affected but so few even know about it Get yourself checked!
*15 million carriers, 3.2 million with disorder in USA alone (1 in 200 double mutation, 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. NO drugs needed.
*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 silently went about scarring my liver, and had i not gotten incredibly lucky would still be undiagnosed, very ill, likely dead. 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 through website, PSA’s Ads on TV, Cable, radio, social media.
*Push for standardized/increased screenings nationwide. Submit screening proposals to medical community – CDC, AMA, Red Cross. Demand standard screenings/ferritin tests at annual physicals when any blood work is run. Make testing and HHscreening 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.
*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.
I hope you’ll help by becoming a member of ironitout.org, fund our advocacy efforts and our annual charity bicycle ride.
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.
Now, meet Carol Jordan – co-founder of ironitout.org and tireless advocate for the cause of Hereditary Hemochromatosis.
She hosts a FB page about iron overload and is often the first responder to folks recently diagnosed, or looking for answers about the disorder. She contributes worldwide to other websites and FB pages on the topic, answering questions, calming people’s fears and directing them to the best medical and support resources. She is the perfect fit for this action network.
Her dream is to see this disorder become part of a worldwide conversation, make it a household name so that early diagnosis and improved treatment is the norm instead of the exception.
Carol Jordan’s earliest memories include reading. Her mother said that while most babies played with their toes, Carol had a book in her hands. She loved reading and learning. When diagnosed with hemochromatosis, Carol read everything she could find about the disorder. The love of reading and of learning paid off in an understanding of the condition that astounded even some of her doctors. She has made it her goal to educate as many people as possible about the symptoms, diagnosis, treatment and prognosis of hereditary hemochromatosis. She dedicates her work to the memory of her father and to honor the members of the hemochromatosis support group on Prodigy who were so instrumental in helping her understand this condition when she began treatment in 1992.
Carol lives in the Florida panhandle with her husband of almost 40 years. She has three grown daughters and nine grandchildren. In her spare time she likes to read and do crafts.