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?

bigdeal-4x3

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

 

 

New CBS Series “Limitless” Features Iron Overload Disorder In First Episode

Hemochromatosis/Iron Disorder Makes Its Network Television Debut!

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The new television series, “Limitless”, features hemochromatosis in its pilot  episode, airing on CBS, Tuesday night @ 10 pm, September 22, 2015.

Through my script writer friend contacts, I was directed to where I could get my hands on an electronic copy of the script.

Limitless Script

Bradley Cooper is one of the executive directors and will make an appearance in the pilot, and the rumor is he will have a recurring role to try and help the show get ratings.

Unknown-1At any rate the plot is about the main character taking a drug that allows him limitless abilities for a period of time while he’s on it… in the first five minutes of the show he plays guitar and chess and basically a montage of him doing brilliant things he couldn’t do… then he diagnosis’s what his father has been suffering from – He says the following – this is straight out of the script:

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BRIAN: My brother’s medical school textbooks were still at my parents’ place. Nobody else could figure out what was wrong with my father. Why can’t I? Suddenly, I knew exactly what I was looking for.

This.

Shows a picture of my grandparents on their honeymoon.
Her eyes, they’re the same as Dad’s.
It runs in the family.

BRIAN: Phones father:
Good morning.
Dad.
I think you’ve got something called, um hemochromatosis.
It’s caused by a trait that runs in our family.
Uh, Grandma Helen had it, your cousin Scott.
You’ve got it the worst out of anybody though and, um it’s ’cause your body can’t process iron.

DAD: All right, stop! Just stop.You spend one night on the floor and suddenly you’re a doctor, Brian?

BRIAN: Dad, listen to me for a second, okay? Now, the inherited version of hemochromatosis is-is one of the most misdiagnosed diseases that there is.
Doctors mistake it for dozens of other things.

DAD: And if they can’t find it, how could you? It’s a long story.
But there is a test that they can run called a, uh, transferrin saturation test.
And, um I-I think you guys should take that.

Today.
(cell phone rings) FEMALE ELECTRONIC VOICE: You have one new message.
MOM: Brian, uh, I don’t know how you knew, but you were right.
Your father has hemochromatosis.
But with your dad, the doctor said it’s concentrated in his liver.
And they say he needs a transplant.
But they say they’re not sure he’ll get an organ in time.
Call me.”

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So basically they seem to have the info correct and it’s great to see that iron disorder  is finally making an appearance on network TV.  We’re going to use this to call attention to the disorder through ironitout.org. And to let folks know that this was not some fictional disorder made up for  a TV drama but a real thing that many of them probably have or are carriers of.  I’m also going to contact the producers of the show and interview them about how they decided to use it as a plot point.

Share this post so folks  will know that Limitless got the facts right and that  hemochromatosis is missed by every doctor in America once every 10 days! Today it takes almost 10 years for the average diagnosis  and it is destroying lives  the whole time. A simple blood test  is all they need  – that is accurate from the script what is not said is that we can and should put that test BACK on the standard panel when anyone gets their blood drawn for examination. The American Medical Association’s own studies state that it would raise diagnosis rate by 20 fold. This is one of ironitout.org ‘s action projects.

Please help us with these projects by donating any amount at:

ironitout.org/support