July Awareness and Outreach
The late Dr. Margit Krikker, MD Founder of the Hemochromatosis Foundation, Albany, New York is responsible for designating July as the month to screen for hemochromatosis in America. To raise awareness, Dr. Krikker once took out a full page ad in the New York Times to inform people of this metabolic disorder. She was a true pioneer and we honor her by continuing to acknowledge July as National Hemochromatosis Screening and Awareness Month.
International organizations observe a week in May and some use the spelling haemochromatosis.
Over the years several hemochromatosis (sometimes misspelled hemAchromatosis) awareness models have emerged. The Cordele Georgia “Test of the Month” was among the first. Newark/Columbus Ohio “A Thousand Irons” was another model where over a 1,000 people were screened for free by Licking County Memorial Hospital (now Health Systems). And from these outreach efforts hundreds of people were identified as having an iron disorder: hemochromatosis/iron overload, iron deficiency with and without anemia, and anemia of inflammatory response.
A third model was The Miss South Carolina Iron Screening event in partnership with Lexington Memorial Hospital in Columbia, SC. This event revealed that more 50% of the young women tested needed follow up discussion with their healthcare provider about too little iron.
Since the inception of these early outreach programs The Iron Disorders Institute (IDI) corporate headquarters Board of Directors launched The Iron Disorders Institute Iron Butts and Knuckles Ride to raise awareness about iron disorders. Why Iron Butts and Knuckles?
Co-founder Cheryl Garrison Garrett explains. “Swollen painful knuckles is hallmark for hereditary hemochromatosis. Our beloved Robert “Aran” Gordon was finally diagnosed by his Johns Hopkins physician because of this one simple complaint. As we broadened our efforts to include iron deficiency one woman told our patient services manager she was ‘so tired (that) she could not drag her “derriere” across the room.’ Hence, the name.”
At a local farmer’s market in Travelers Rest, South Carolina, thanks to the Greenville County Recreation Department loan of its Corporate Bike riders peddled together and spoke with people at the market about iron. Business sized cards with the iron panel tests on the back side were handed to people. The 2015, 2016, 2017, 2018 event wrapped up in a rural town with fireworks. At each of these events individuals with iron disorders were identified and helped.
See 2017 and 2018 Moon Boom for a message from board members.
THE DANGERS OF MISDIAGNOSIS
Gerry Koenig’s Story required 2 liver transplants due to misdiagnosis.