We Need Your Hemochromatosis Story For Awareness Campaign!

Please, don’t make us beg… O.K. this is us begging... we need your help –   consider this a formal request from ironitout.org  – let your story be told and help us save lives! we_need_your_help_blog_big

We need you personal story, the story of a family member, friend or co-worker for our awareness campaign! If you’ve been touched by iron overload, here’s your chance to get involved.

Not sure how to do this? Here are a few options:

*Make a 1 min video clip with your smartphone, iPad, computer, then upload it to youtube  or the group fb page and send us the link. Get a family member or friend to help shoot it.

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Tell me your story, I’m begging you.

*Write up your story and send it to mtcowboy@teleport.com or info@ironitout.org  If possible Include photos and images and we will turn your story into a 1 min. video clip and written posts – just tell your story from the heart – who you/they are, hobbies, career, family – what they love and do and how they were diagnosed, misdiagnosed, not diagnosed, illnesses. etc.  If you have video of yourself or the person in the story doing something in life include that and we’ll edit it into the video clip.

If you think the other person will step up, you’re wrong. We need you to tell your story.

Go to ironitout.org or post in the group or post it to youtube and let us know the link or where it’s been posted. or simply send your write to mtcowboy@teleport.com

Note: This is NOT a commercial project. We are a nonprofit organization and the video clips and stories and images will be used for an awareness campaign not commercialized in any way.

Thank you in advance for telling your story. It will save lives.

 

 

 

 

Fact-Checking A Consumer Reports Article About Iron Overload

Here at ironitout.org we appreciate any and every article published about iron overload because each raises awareness. But with 20 years of investigative journalism in our ranks, we  think it’s helpful to fact check articles and share the results with the public. Here’s the article. The red type is our researched corrections.

 

Hemochromatosis, iron-overload disease, is more common than previously thought By Consumer Reports September 2, 2013

The headline is a step in the right direction for hemochromatosis awareness, but if consumer reports is talking about the statistical data regarding how many people have the mutation in the population, this number has been known for decades and has not changed. No one suddenly discovered a flaw in the calculations.  The headline might be referring to how, after 20 years of working from few and flawed studies, the medical community is waking up. Iron overload is the source of many resulting illnesses. Iron overload is the trigger. For years Doctors were trained that lots of people carry the mutations, nearly 3 million in the USA alone, but few get sick. In reality, few show symptoms (1 in 4) so the disorder is allowed to progress silently. And those who do show early symptoms are misdiagnosed and don’t get the simple, life saving treatment before the damage is done.

 
During your next game of medical trivia, Consumer Reports’ chief medical adviser, Marvin M. Lipman, suggests that you ask this question: “What’s the most common genetic disease of white men?” If all you do is draw blank stares, you can provide these clinical vignettes as clues:

●An apparently healthy 50-year-old man whose father, a nondrinker, died of cirrhosis of the liver.

●A 45-year-old man with severe heart failure whose coronary arteries are clear and heart valves are normal.

●A 57-year-old man with new-onset diabetes and a year-round tan who seldom exposes himself to the sun.

The answer: hemochromatosis. And in case that leaves the people you’ve stumped with only a quizzical look on their faces, you can add, “You know, iron-overload disease.”

Hemochromatosis was for many years thought to be a rare genetic disorder, Lipman notes. But today we know that it results from the inheritance of an abnormal recessive gene from each parent. Studies have found that one in every 150 to 250 white people is affected. It’s less common among blacks and practically nonexistent among Asians. The disease rarely shows up before people are in their 40s or 50s, and men are 24 times as likely to have complications from it as are women.

Symptoms and accompanying damage from the disorder don’t manifest/show up in many people until their 40s -TRUE – but this is different and less relevant that the disease being present since birth. It’s a genetic disorder, with a person from the start.  With national screening we’d know who had it, monitor iron levels regularly to prevent any damage ( which won’t be detected otherwise until it’s too late in most people) with simple, inexpensive, safe treatment.

Men and women acquire the mutation at the same rate. It’s bad science not backed up by data to say that men are 24 times more likely to have complications.To start, the medical community is working with very sparse and incomplete data because so few people are diagnosed of the total number who have it. Of those men who have been connected to the disorder, the only statistically significant  higher complication rate is with liver failure and cirrhosis. Other studies find women with the disorder  present complications with arthritis at a higher rate than men. It’s a myth that iron overload is an older white man’s disease. 

The defective gene causes decreased production of hepcidin, a liver protein that prevents the intestinal absorption of excess dietary iron. Except for menstruating women, we ordinarily need very little iron in our diets to balance out our losses. Were it not for that hepcidin-mounted defense, we all would be at risk for iron overload just from dietary sources. And when too much iron is absorbed, it can infiltrate and eventually destroy almost every major organ in the body.

Serious complications
People who don’t make enough hepcidin have no such protection, yet only about 10 percent will ever develop symptoms, for reasons still not understood. And in those who do, not all organs are involved at the same time or to the same extent.

Again, it’s bad science to say that only 10 percent with hemochromatosis develop symptoms, because the medical community is only diagnosing a small percentage of the total effected population. Most people with HH go through their life without knowing they have it, even while that are suffering a chronic illness triggered by it, or have their life cut short and are in a cemetery with a death certificate that lists cancer, heart failure, diabetes, liver failure as the cause of death, when in fact it was iron overload that put them there.

The liver is most commonly affected, with cirrhosis (scarring) and liver failure the ultimate result. About 6 percent of those with cirrhosis develop liver cancer. A timely liver transplant offers the only chance for survival.

To avoid the fate of his father, the first man described above is getting the standard treatment for hemochromatosis, which involves periodic phlebotomy (bloodletting) to get rid of some of the excess iron.

When the heart is affected, as in the second vignette, the result can be cardiomyopathy (the replacement of the heart muscle with scar tissue), heart block (a disorder that causes a slow heart rate) and other abnormal heart rhythms. The cardiomyopathy is often resistant to treatment, and a heart transplant might be the only solution.

Infiltration of the pancreas with iron can cause secondary diabetes. If iron is also deposited in the skin, causing a brownish coloration as in our third example, the condition is referred to as “bronze diabetes.” The endocrine system, including the pituitary gland, the thyroid and the testicles, suffers as well, with impotence and other deficiencies as the result.

Who needs testing?

The laboratory markers for hemochromatosis can be found in relatively inexpensive blood tests. Elevation of serum ferritin, the protein that stores iron, can be the best indicator of increased iron. If tests show that transferrin, the protein that transports iron through the bloodstream, is saturated with iron, that virtually clinches the diagnosis. Gene testing should also be done before a patient begins periodic phlebotomy for an indefinite period of time.

The test mentioned was on the standard panel of initial blood tests  but was removed in 1996 for a host of  financial and political reasons, none of them medically sound. The number of lives lost by taking the test off the panel can’t be determined.

Despite the frequency of the disease, universal screening is not recommended.

False, The American Medical Association’s own study found that universal screening would increase early diagnosis and treatment rates 20 fold. 

Experts disagree about who will and who won’t develop symptoms, and the large racial disparities in disease prevalence argue against screening everyone. But targeted screening of people with certain risk factors and symptoms makes good sense.

A Kaiser Permanente program that hosted universal screening in San Diego increased diagnosis and treatment at a rate of 1 in 181 patients. In 2015 every doctor in the USA lets a case of iron overload walk out of the office undetected every 12 days. 

Ask your doctor about testing if you have one or more of the following:

●A family history of hemochromatosis.

●A close family member with “nonalcoholic” cirrhosis of the liver, cardiomyopathy or primary liver cancer.

●Unexplained abnormal liver-function tests.

●Cardiomyopathy, heart block or abnormal heart rhythms.
●Adult-onset diabetes mellitus that requires insulin treatment.

●Impotence traceable to an endocrine cause.

Copyright 2013. Consumers Union of United States Inc.

For further guidance, go to www.ConsumerReports.org/Health, where more detailed information, including CR’s ratings of prescription drugs, treatments, hospitals and healthy-living products, is available to subscribers.

 

To read the original article without our commentary:

https://www.washingtonpost.com/national/health-science/hemochromatosis-iron-overload-disease-is-more-common-than-previously-thought/2013/08/30/4c15e7a4-eff2-11e2-a1f9-ea873b7e0424_story.html

Stopping A Killer: Diagnosing Iron Overload Early = 20 Fold Treatment Increase!

But without standard screening for hemochromatosis we’re only catching an estimated 15 percent of the 1.7 million undiagnosed US population walking around with this time bomb.

images-1575 Percent Don’t Have Symptoms During Crucial Early Stages = Silent Killer.

Allowing iron to quietly build to toxic levels is the most insidious and lethal aspect of this disorder. People feel fine until it’s too late… right up until they need a new liver, get a cancer diagnosis or experience heart failure, diabetes, cirrhosis, crippling arthritis.

I was that person. A world class athlete, father of four, travel writer, active, non-smoker, non drinker in my prime… and 2-3 years from cirrhosis and shopping for a new liver. Saved by an annual physical, my big mouth and a sharp doctor who followed up rather than telling me my slightly elevated liver tests were nothing to worry about.

joe-boys

Most doctors don’t catch it at all, misdiagnosis for other illnesses or don’t treat people with iron overload until they seek help for the resulting illnesses, not the source that is causing it.

“ … most physicians have never personally diagnosed a case: all see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP

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A nationwide screening program is imperative. The American Medical Association said screening would increase early diagnosis 20 fold, i.e. 20,000 would become 400,000 diagnosed in time.

 

“ … many are misdiagnosed as some other, more familiar condition which has the same initial appearance.” -David Baer, MD, FACP

The tragedy is that in 2015, the technology is in place, and simple, inexpensive blood tests exist to catch this, the most common, deadly genetic disorder in the world, but so many people suffer chronic illnesses and die without knowing they had a loaded gun to their head, that could have disarmed before it went off. As iron builds-up in the body one in four may develop the following symptoms as it accumulates in the brain and other body tissues:

Brain fog, Fatigue
Low sex drive and erectile dysfunction (iron accumulates in the testicles)
Mood swings, especially anger
Digestive problems as iron builds-up in the gut
Anxiety
Depression
Fatigue after meals (insulin resistance)
Memory loss
Joint pain
Weight loss
Abdominal pain
Hair loss
Congestive heart failure

Iron-Overload

Often, when symptoms appear, the disorder has progressed. This is why standard screening/ferritin testing and doctor education is so crucial. When symptoms do appear early they often present as common middle age ailments, so are either ignored or misdiagnosed and often treated with medication for arthritis, or with viagra, testosterone therapies.

This can change, and it won’t take millions of dollars of research. The budget for one year of drug research and development for an magic iron overload pill would pay for a national screening program.

National Screening, more info. @ ironitout.org

Please support our funding campaign to fight for national screening:

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

A Dozen Deadly Facts You Should Know About Iron Overload!

1. Cancer

 Does not pop up out of the blue! It has many triggers, one verified cause is hemochromatosis/iron overload. And the longer one’s organs are saturated with iron, the greater the risk.

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CDC, NIH, John Hopkins and Mayo Clinic studies all concluded that patients with hereditary hemochromatosis (HH) are at a 20-200-fold risk of intrahepatic (Liver) cancer.

The Journal of The National Cancer Institute reported on studies that concluded that after controlling for multiple confounders, subjects who had HFE gene mutations (iron overload) had a statisically significant increased risk of colon cancer.

Multiple studies concluded that iron is an essential cofactor for cancer growth of multiple cancers: stomach, liver, pancreas, gallbladder and colon in particular.

Microsoft PowerPoint - Figure_1 [Read-Only]

 

 

 

 

 

 

Bottom line: Iron stored in tissues and organs is toxic and opens one up to infection and cancer. Early diagnosis and removal through phlebotomies is crucial to positive outcomes. Just think how many people we could help avoid battling and/or dying from these cancers with awareness, universal screening, early treatment of hemochromatosis.

Study link 1

Study link 2

2. No National Screening Program. Testing Iron Levels Was Once Standard.

Until 1996, ferritin testing (iron level blood test) was on the standard executive blood panel; the primary test run when getting a physical or in the emergency room. It’s used to rule things out and get a baseline. It’s a cheap, wonderful diagnostic tool. High iron levels indicate inflammation and alert doctors to that a patient could have iron overload – follow up and a simple genetic test tell with100% certainty if it’s hemochromatosis/iron overload.

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The American Medical Association’s own study concluded there would be a 20 fold increase in detection of HH/iron overload if the ferritin test was put back on the standard panel.

Wrap yourself around those numbers. For example, if 20,000 people are diagnosed annually, we’d see a bump to 400,000 new cases in the USA alone… simply by putting one test back on the panel.

Why was it taken off the standard blood panel in the first place? One answer comes from San Diego, where a lab was double dipping, billing twice, once for the standard panel and once for the iron test, to the tune of $125,000,000 dollars annually. Instead of bringing fines and criminal penalties against the lab and individuals responsible, those in charge of what goes on the test panel simply pulled the iron test off.images

It’s painful to think about how many lives could have been saved between 1996 and now, if that test had remained on the standard panel. We should be advancing, not going backward in medical diagnosis, early treatment and preventative care.

Making the ferritin test standard again will also help more people diagnose anemia, wilson’s disease, liver disease, rheumatoid arthritis, other inflammatory conditions and hyperthyroidism. Getting the  ferritin test back on the panel is one of three action project’s of ironitout.org

3. Heart Attack, Heart Failure

Iron accumulation in the heart muscle produces irregular heart rhythm and heart failure causing shortness of breath and swelling of the ankles, disability and death.

Iron-Overload

High blood pressure is another tip off that you might have iron overload. Think of how many people you’ve met or hear about in their 40s who aren’t smokers, heavy drinkers and live fairly healthy who come down with heart issues. Iron overload is the culprit in a percentage of these cases, but it gets overlooked time and again.

 

 

 

4. U.S Medical System Tosses Countless Gallons Of Transfusable Blood 

Iron Overload/Hemochromatosis is NOT a blood disorder. It’s a genetic metabolic disorder. HH blood is no thicker or darker, or different in any way. It’s not rusty or higher in iron or anything else compared to the general population’s blood.

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And there’s no medical reason it’s been thrown out all these years. It’s because of procedural hurdles which, as of May 2015, were removed nationwide.   ironitout.org played a role in the recent FDA ruling that lifted all procedural  restrictions on blood donations from people with HH.

There is no medical reason why blood from people with hemochromatosis should be kept from use in transfusions. Think of the lives AND money saved by this source of denotable blood going into veins instead of down drains. The cost of blood goes down and  it reduces shortages nationwide.

An article in Blood Journal notes that the use of hemochromatosis blood could augment the US national blood supply.  The results of a study at the National Institutes of Health demonstrated that recruitment of healthy hemochromatosis donors augments the intramural blood supply significantly.  Patients with iron overload are allowed to donate blood more frequently than other volunteer donors. A healthy hemochromatosis patient will donate up to 60 pints of blood in the first year of treatment and, on average, 8-12 pints  per year thereafter.images-3

In Canada, blood from hemochromatosis patients has been used for transfusion since 1991. In Wales and Sweden, hemochromatosis blood used for transfusion impacted blood shortages.

For years pint after pint, week after week has gone into biohazard bags, classified as hazard waste increasing disposal costs which are  passed on to the public.

To recap, HH blood can be used in transfusions. As of May 215 all  procedural restrictions  were lifted, HH donors are highly motivated “super donors” (52 pints in first year). It would reduce blood shortages and eliminate disposal costs.

The crucial next step is getting blood banks, hospitals and the Red Cross to learn about acknowledge and educate staff  to new standards of donation acceptance, and actively recruit and advertise for HH donations.

If you are interested in donating your blood, rather than seeing it thrown out, contact your blood bank, hospital or Red Cross directly and demand they accept it for transfusion/educate them and direct them to ironitout.org for information and further questions.

“For years now, we’ve been using blood from the phlebotomies of hemochromatosis patients for transfusions. The patients are pleased to help others in this manner, and the practice has helped greatly in a time of blood shortage.”

-Vincent J. Felitti, MD Southern California Kaiser Permanente San Diego, California

5. 75 Percent Don’t Have Symptoms During Crucial Early Stages = Silent Killer

Allowing iron to quietly build to toxic levels is the most insidious and lethal aspect of this disorder.  People feel fine until it’s too late… right up until they need a new liver, get a cancer diagnosis or experience heart failure, diabetes, cirrhosis, crippling arthritis.

Unknown-3

Too often, doctors treat people with iron overload for the resulting illnesses, not the source that is causing it. 75 percent have no early symptoms, making a nationwide screening program imperative. The American Medical Association said screening would increase early diagnosis 20 fold, i.e. 20,000 would become 400,000 diagnosed in time.

“ … most physicians have never personally diagnosed a case: all see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP

“ … many are misdiagnosed as some other, more familiar condition which has the same initial appearance.” -David Baer, MD, FACP

The tragedy is that in 2015, the technology is in place, and simple, inexpensive blood tests exist to catch this, the most common, deadly genetic disorder in the world, but so many people suffer chronic illnesses and die without knowing they had a loaded gun to their head, that could have disarmed before it went off. As iron builds-up in the body one may develop the following symptoms as it accumulates in the brain and other body tissues:

images-12

Brain fog
Fatigue
Low sex drive and erectile dysfunction (iron accumulates in the testicles)
Mood swings, especially anger
Digestive problems as iron builds-up in the gut
Anxiety
Depression
Fatigue after meals (insulin resistance)
Memory loss
Joint pain
Weight loss
Abdominal pain
Hair loss
Congestive heart failure

Often when symptoms appear the disorder has progressed. This is why standard screening/ferritin testing and doctor education is so important. When symptoms do appear early they often present as common middle age ailments, so are either ignored or misdiagnosed and often treated with medication for arthritis, or with viagra, testosterone therapies.

National Screening, more info. @ ironitout.org

6. Avg. Diagnosis Takes 10 Years

Why? Because even though we have simple, inexpensive tests we don’t screen the general population. With nationwide screening using first line blood testing, we’d cut diagnosis time by 70 percent and increase diagnosis rate 20 fold.

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Another reason? Because in the early stages, when simple treatments can be the difference between a full, healthy life expectancy or chronic illness and death, 3 out of 4 people with HH show little to no symptoms.

 

 

 

 

“ …while most physicians have never personally diagnosed a case: all see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP

“ … many are misdiagnosed as some other, more familiar condition which has the same initial appearance.” -David Baer, MD, FACP

The tragedy is that in 2015, the technology is in place, and simple, inexpensive blood tests exist to catch this, the most common, deadly genetic disorder in the world, but so many people suffer chronic illnesses and die without knowing they had a loaded gun to their head, that could have disarmed before it went off.

How many people get Hemochromatosis?
Prevalance of Hemochromatosis: more than 1.5 million Americans (CDC); 5 per 1000 in
Prevalance Rate of Hemochromatosis: approx 1 in 272 or 0.37% or 1.5 million people in USA
Undiagnosed prevalence of Hemochromatosis: 1.7 million Americans (Hemochromatosis Foundation) date formula = Undiagnosed prevalence rate of Hemochromatosis: approx 1 in 181 or 0.55% or 1.7 million people in USA. That’s 3 million people.

A national screening program would lead to pinpointed genetic testing for the disorder.

Genetic testing for hemochromatosis has a number of unique characteristics. Unlike most genetic diseases,  hemochromatosis is a single genetic mutation (C282Y) that explains most typical cases. The test is widely available and can be performed at a relatively low cost.

There have been a number of studies that have assessed the psychosocial impact of genetic testing for hemochromatosis  -concluding that the test is well accepted by patients and has rarely been associated with insurance discrimination.

For these reasons, the genetic test has become one of the most commonly requested tests and is a powerful diagnostic tool accessible to most physicians. If promoted  and advertised to the public, diagnosis would increase dramatically.

7. Rarely Diagnosed, Often Misdiagnosed – Not A Rare Disorder

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 the most common, treatable genetic disorder that is rarely diagnosed.

A large population study showed that 1 in 227 Caucasians in North America is homozygous for the C282Y mutation of the hemochromatosis gene. 1 in 300 in the general population. This is the typical genetic pattern seen in over 90% of typical patients; however, 75 percent of C282Y homozygotes  are asymptomatic. Approximately 20% of male homozygotes and 50% of female homozygotes will have normal serum ferritin levels.

If the disease is defined based on symptoms, the prevalence would be much lower, and because the symptoms may be non-specific, it is more difficult to assess the prevalence of symptomatic hemochromatosis. This means the current system of screening in the USA catches less than 15 percent of actual cases.

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There’s a huge difference  when looking at referred patients and participants in population screening studies. Many doctors now question whether the genotype should be used to define hemochromatosis or whether it should be based on the presence of iron overload, independent of genotype.

Bottom line: This condition is extremely common, but hard to catch without a national screening program. Physicians should have a low index of suspicion/not require a high threshold of symptoms, when ordering screening tests, such as the transferrin saturation and the serum ferritin tests, for iron overload.

It’s so deadly because it shows early symptoms in minority. 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.

To put the size and scope of hemochromatosis in perspective here let’s compare it with three other diseases with much higher name recognition:

ALS 20,000, Muscular Dystrophy 45,300, Multiple Sclerosis 400,000 = 465,300 compared to Hemochromatosis = 1.7 million undiagnosed 1.3 million diagnosed.

That’s three diseases with a combined total of 465,300 compared to 1.7 million people with hemochromatosis.

This is NOT  an argument 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. It kills countless people in their prime.

8. Women Get Hemochromatosis At The Same Rate As Men

It’s an erroneous statement proliferated in the medical community that women are rarely affected by hemochromatosis.

As an autosomal recessive condition, hemochromatosis affects men and women equally in regard to the inheritance of the hemochromatosis gene. That’s 50/50.

Unknown-6

It’s long been considered that the effects of menses (monthly cycle) and pregnancy significantly offset the lifelong accumulation of iron with tissue injury. But a study of 176 female hemochromatosis patients, matched to 176 male patients with respect to birth year, demonstrated similar hepatic iron concentrations in both sexes. On average, the women in the study showed symptoms around age 50, while men showed signs only  two years earlier.

For certain conditions like cirrhosis and diabetes, rates were higher in men, but for others, like fatigue and arthritis, rates were higher in women. Roughly 94 percent of the women, versus 100 percent of men had abnormal measures of iron stores in the body.

It is also important to assess women for this disorder so that genetic counselling can be provided to their children and siblings.

9. Marginalized As An Old White Guy’s Disorder

Even though hemochromatosis  is an autosomal recessive condition and presents itself equally in men and women,  it’s been widely called an older male disease by the medical community and even though the science says otherwise, the myth persists. Why is this important, because it has a strong influence on why every doctor in America misses diagnosing a case of HH every 12 days.

61960008

The challenge is that iron overload builds slowly, usually taking 25-30 years before symptoms appear, but organ damage can be underway long before symptoms are present.

Younger men and women, in equal numbers, are loading iron without anyone’s knowledge. This is why calling it an older white male disorder is so dangerous.

In clinical practice, liver damage effects of iron overload are seen in males in their mid to late fifties at a slightly statically higher rate. Women present arthritis symptoms first and so are often misdiagnosed and treated incorrectly. But in reality, both genders have been loading iron for years.

These are some of the reasons HH has acquired the mistaken identity of an older male’s disease.

10. Cirrhosis/Liver Failure

Iron overload builds in all organs, but the liver is where it loads first and in high deposits.  Liver function abnormalities occur in 35-75% of HH patients.

images-1Among organ-related symptoms, liver damage is seen in more than 95% of patients and can be accompanied by signs of chronic liver disease, such as abdominal pain and cutaneous signs of liver disease (palmar erythema, spider angioma, or jaundice), and liver failure (ascites or encephalopathy).

Cirrhosis is due to progressive iron deposition, and it is one of the most common disease manifestations of the tissue damage caused by hemochromatosis. Cirrhosis may be complicated by liver cancer. This condition is also the most common cause of death in patients with hereditary hemochromatosis.

Cirrhosis reversibility after iron removal has been reported, usually early in the course of liver disease, although reversal of advanced liver disease with varices has also been reported.

If treated in time even a scarred liver, pre-cirrhosis can return to normal.

11. Diabetes 

Hemochromatosis is sometimes referred to as “bronze diabetes” because of the appearance of some patients skin (tanned) when they are diagnosed. But Hemochromatosis is also a trigger for Type 2 diabetes.

images-2

The prevalence of diabetes in hereditary hemochromatosis has been estimated at between 20-50%. The pathology of diabetes in hereditary hemochromatosis  originates in beta cell dysfunction and decreased insulin secretory capacity rather than increased insulin resistance. Patients tend to be insulin-dependent; insulin requirements often fall during phlebotomy, but the need for insulin persists.

Bottom line, early diagnosis and treatment will greatly reduce type 2 diabetes cases in people with hemochromatosis.

12. Lack of Awareness

What we don’t know CAN kill us. There are thousands of personal stories, many tragic, about discovering this killer disorder too late.

https://www.youtube.com/watch?t=5&v=OSkd8EXWJUw

Some are success stories where the disorder was discovered in time – many of these stories follow a similar theme  – the patient came in for something else, dumb luck, they were very proactive about their health, or a sharp doctor who has looked beyond outdated recommendations and faulty conventional wisdom saves their life.

https://www.youtube.com/watch?t=12&v=kIAwFO6Sbx4

Please help ironitout.org by funding three action projects: Donate @ https://www.youcaring.com/iron-overload-action-network-ironitout-org-434486/donate#wp

Why “At Least It’s Not Cancer!” Devastates Hemochromatosis Awareness/Progress.

No, Hemochromatosis is not, in itself, cancer…  in many ways it’s far worse.

Why? Imagine 1.7 million people walking into an ambush with multiple enemies, coming from all sides, gunning for them.

Iron-Overload

Hemochromatosis is the trigger that allows iron to overload your organs and tissues, letting not one, but a host of cancers a shot at growing in organs loaded and compromised with toxic levels of iron.

Microsoft PowerPoint - Figure_1 [Read-Only]

 

 

 

 

 

 

If that wasn’t enough, when a body overloads iron, it invites reinforcements to the ambush,  in case the cancer assassins can’t get the job done. Chronic and deadly illnesses including – cirrhosis, heart failure, heart attacks, liver failure, diabetes, impotence, arthritis and alzheimer’s.

Too often, doctors treat people with iron overload for the resulting illnesses, not the source that is causing it. 75 percent have no early symptoms, making a nationwide screening program imperative. The American Medical Association said screening would increase early diagnosis 20 fold, i.e. 20,000 would become 400,000 diagnosed in time.

61923015

“ … most physicians have never personally diagnosed a case: all see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP

“ … many are misdiagnosed as some other, more familiar condition which has the same initial appearance.” -David Baer, MD, FACP

The tragedy is that in 2015, the technology is in place, and simple, inexpensive blood tests exist to catch this, the most common, deadly genetic disorder in the world, but so many people suffer chronic illnesses and die without knowing they had a loaded gun to their head, that could have disarmed before it went off.

images-6

You, your friends and family do not have to suffer or die. Help ironitout.org drag this stealth killer into the light. We need to fund three action projects. National Screening Program, National Awareness Campaign, Nationwide HH blood Donation Program.

You can help directly by donating to:

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