How big a deal could this hemochromatosis thing be, anyway? If it were affecting a large number of people wouldn’t I have already heard of it?
Hemochromatosis is a common, treatable disorder that is rarely diagnosed. It’s asymptomatic in 75 percent of cases. When symptoms do arise they are often misdiagnosed because of their similarity to other ailments, or present themselves as the end resulting illness – cancer, cirrhosis, arthritis, diabetes, heart failure. Doctors treat the resulting conditions rather than look for a source. Add to that no standardized, first line screening panel of blood work. It exists, is quick and inexpensive, but we don’t do it the USA.
ALS 20,000, Muscular Dystrophy 45,300, Multiple Sclerosis 400,000 = 465,300
Hemochromatosis = 1.7 million
Statistical Prevalence Of Four Diseases and Disorders In US Population.
ALS = 20,000
Approximately 6,400 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people. It is estimated that more than 20,000 Americans may be living with ALS at any given time.
Muscular Dystrophy = 45,300
15 out of every 100,000 males ages 5-24 years = 45,300 cases in USA at any given time.
Multiple Sclerosis = 400,000
The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States have MS at any given time.
Hereditary Hemochromatosis/Iron Overload
Prevalance of Hemochromatosis: 1.3 million Americans (CDC); 5 per 1000. Undiagnosed prevalence of Hemochromatosis: 1.7 million Americans (Hemochromatosis Foundation). 15 million carriers.
That’s three diseases with a combined total of 465,300 compared to 1.7 million people with hemochromatosis.
We are NOT arguing against supporting the fight to end the devastating results of ALS, MS and MDA, and fund cures. No, it’s a wake up call alerting the public to the size and scope of iron overload – a deadly disorder that is not rare at all, but rarely diagnosis, or treated in time.
Until now it has flown under the radar while it kills countless people in their prime. The cause of death listed as heart attack, heart failure, cancer, liver failure, cirrhosis and diabetes when they could have lived to old age.
Hemochromatosis has no telethons, bucket challenges, bike rides, or cure walks.
Until now. Now it has ironitout.org – Iron Overload Action Network.
And here’s the good news. The fix is not millions of dollars of research away. It involves installing a national screening program, early diagnosis, simple blood tests, getting everyone who has the disorder and is loading iron treated with therapeutic phlebotomies, and a national education/awareness campaign. And all that good, denotable blood from the phlebotomies needs to start going into other people’s veins, instead of down the drain.
Help us save so many many lives. It’s hard to outrun something you don’t know is chasing you. We want to help you find out if you’re being pursued by a silent killer… and stop it in its tracks.
Our business plan estimates $250,000 to complete each of our three action projects.
We think we will bring lasting change to the medical system and significantly effect diagnosis rates and early treatment for a total budget of $750,000
When we accomplish our goals we will fold our tent and celebrate a job well done. We don’t want to be an institute of noise – office buildings, an army of staff, trying to sustain itself so it can sustain itself. We have a mission, we want to complete it and then walk away.
Help us do that. Help make us obsolete be making a donation to our projects. Fund us @