The Numbers: More Hemochromatosis Cases Than ALS, MS, MDA Combined.

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?

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Nope.

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.

The Numbers: 

ALS 20,000, Muscular Dystrophy 45,300, Multiple Sclerosis 400,000 = 465,300

Vs

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.images

 

 

 

 

Muscular Dystrophy = 45,300

15 out of every 100,000 males ages 5-24 years = 45,300 cases in USA at any given time.

Muscular Dystrophy Association logo. (PRNewsFoto/Muscular Dystrophy Association)

Muscular Dystrophy Association logo. (PRNewsFoto/Muscular Dystrophy Association)

 

 

 

 

 

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.

Unknown

 

 

 

 

Hereditary Hemochromatosis/Iron Overload

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Prevalance of Hemochromatosis:  1.3 million Americans (CDC); 5 per 1000. Undiagnosed prevalence of Hemochromatosis: 1.7 million Americans (Hemochromatosis Foundation). 15 million carriers.

 

 

Iron-Overload

 

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.

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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 @

https://www.youcaring.com/iron-overload-action-network-ironitout-org-434486

 

 

4 thoughts on “The Numbers: More Hemochromatosis Cases Than ALS, MS, MDA Combined.

  1. I have been a nurse for 25 years and would like to help with awareness any way I can. I was diagnosed with Progressive MS 9 years ago. I was diagnosed with HH 5 months ago after I questioned my RBC and asked for ferritin (over 2000), saturation (89%) and binding. then I had to request they do genetic testing. I am Homozygous C282Y. My ancestors are from Germany, Ireland and England.
    Nine different doctors (hematologist, cardiologist, neurologist etc.) failed to diagnose or even follow up on high levels. I have to ask if doctors are this ignorant or do they want the money for all those tests they’re doing?

  2. I have Homozygous C282Y. My mother, father and brother all died mid 50’s of heart related disorders. The condition was not yet diagnosed in my family. Now I am 52. I was diagnosed January and have had 30 phlebotomies. I am hoping they will save me from the same fate. My extended family and friends think I am overestimating the severity of this illness, even though my family clearly has all died of it. I am very keen for more public awareness/diagnosis as it will save the lives of many but will also stop hospitals needing to pay for blood. Blood is a big business. More HH diagnoses = more saved lives of HH patients and patients whom may need blood for life. Thanks for your work.

    • Thanks for posting Cyndi. The medical system has been fed the line that HH has a high prevalence rate but not deep penetration – meaning a lot of people have it but it doesn’t do anything to them.This was due to a 16 year old self reporting study, flawed that was used to tell doctors how to proceed. We need to educate the world, Please donate what you can to this action network. ironitout.org/support we are doing tangible action projects to get mandatory screening, raise awareness and programs to accept the approved HH blood thrown away right now instead of used for transfusion. Best, Joe Kurmaskie founder ironitout.org

    • Toni, This is the problem – so many folks don’t think it’s a big deal because if it was wouldn’t they have heard more about it? Please keep strong, get the treatments, I have you in my thoughts and keep using our info to show friends, family etc. that this is a deadly disease that is treatable and best treatable early in it’s progression! here’s a new post that should be required reading for your friends. http://ironitout.org/why-at-least-its-not-cancer-devastates-hemochromatosis-awarenessprogress

      Please donate what you can spare to our projects: https://www.youcaring.com/iron-overload-action-network-ironitout-org-434486

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