February Kicks Off Our “Giving The Middle Finger To Hemochromatosis” Campaign

“Giving The Middle Finger To Hemochromatosis”

Iron Overload Disease has screwed over so many good people around the world. It’s taken lives and ruined futures and it causes so much chromic illnesses, and often without warning. 3 million with HH and 15 million carriers who can and do load iron in the USA alone. The disease poisons your organs and tissues by storing excess iron.  which can lead to liver failure, heart attacks, cirrhosis, Alzheimers, arthritis, and a host of cancers. Average diagnosis takes 10 years, 75 percent don’t feel symptoms. Early diagnosis and treatment is crucial.

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Joe Kurmaskie, the founder of ironitout.org will be joined all month by his favorite singers, actors, scientists, teachers  and more to help tell the most common deadly genetic disease in the world – orphaned, marginalized and ignored for two decades – where it can stick it! (disclaimer: these are public domain, unaltered meme style images of public figures, not to be mistaken for formal endorsements. That said, we think many of them would be hip to the cause, so if they want to get in touch… )

For anyone who might consider this  in any way offensive, just consider how offensive it is that simple blood tests to detect this disease were taken off the routine panels nationwide to save money… at the cost of countless lives!

Share these memes far and wide and sign our petition here. petition

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US Medical Center Seeks to Raise Awareness of “Grossly” Under Recognized Hereditary Hemochromatosis

One US Medical Center gets it and is trying to do something about it. Read the article below. Now we need the rest of the medical system to take notice and take action! This disease not only dwarfs MDA, ALS, MS, and is on par with diabetes, it is very treatable with early, proper diagnosis – preventing many other resulting illnesses! It’s such a no brainer, but it remains in the shadows, orphaned and overlooked. Let’s change this.

We need everyone to sign our petition to get simple blood tests back on the routine CBC panel. That one change will save countless lives Sign here: Petition

US Medical Center Seeks to Raise Awareness of “Grossly” Under Recognized Hereditary Hemochromatosis

Physicians at Ohio State University Medical Center are leading an initiative to raise awareness of hereditary hemochromatosis.

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“Hemochromatosis is probably the most common disease you’ve never heard of,” said Dr. Mark Wurster, a hematologist at OSU Medical Center. “It’s probably the single most common genetic disorder in the American population, but it’s grossly under recognized and grossly under treated.”

An estimated one in 10 Americans carry the genetic trait for hereditary hemochromatosis (HHC), and about one in 250 are considered at highest risk because they carry the genetic trait from both parents.

Because early signs of the disease mimic numerous other disorders, Wurster and colleagues are pursuing more frequent screenings for HHC, especially among family members of patients diagnosed with the disorder.

“The sad fact is physicians don’t tend to look for the majority of cases before there’s a clear reason to look, which means preventable disease might be missed,” Wurster said. “If we can catch people before they manifest complications from heriditary hemochromatosis, we can treat them with very low-tech, very cheap and very safe methods, prevent complications and allow them to lead a perfectly normal life.”

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The treatment – regularly scheduled donations of a unit of blood to eliminate excess iron in the body – has the added bonus of contributing to the community blood supply, he noted.

A telltale sign of the disease is skin that has turned bronze, an indication of iron accumulation in the skin that points to the onset of “bronze diabetes,” an insulin-dependent form of diabetes. But that damaging disorder, as well as congestive heart failure and other complications, can surface up to 10 or 15 years after onset of HHC. As the excess iron accumulates, its toxic effects can lead to scarring and inflammation in organ systems.

“We’re emphasizing trying to recognize the possibility of hereditary hemochromatosis at the earliest point possible to prevent irreversible complications of the disease,” Wurster said. “We’re also just trying to raise awareness in the community about how common the disease is and how easy it is to keep people out of trouble.”

A simple blood test to detect iron levels followed by a genetic assay can be used to detect the disease. Wurster is leading an initiative at OSU Medical Center to increase patient convenience through the availability of one-stop testing, treatment and referral options for common disorders, including hemochromatosis.

Sign petition here:Petition

Source for article:

http://www.toomuchiron.ca/2015/11/us-medical-centre-seeks-to-raise-awareness-of-under-recognized-under-treated-hereditary-hemochromatosis/

Reasons People Signed Petition Sobering, Heartbreaking – Your Turn To Stop Needless Deaths, Suffering. Sign And Share!

images-11 Ignorance or Greed?

Either the medical system puts iron tests back on the routine blood panel because they embrace simple, life saving preventative medicine, or own that it’s more profitable to treat chronic illnesses.

Because that’s the story of the past two decades of hemochromatosis.

Real people share why they’ve signed ironitout.org’s petition to put iron tests back on blood panels. It’s sobering, heartbreaking – the complications and illnesses are preventable with early diagnosis. Now it’s your turn to sign, share, save lives and help change the system.  Sign here: petition

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Paul Schafer SEATTLE, WA – A friend of mine didn’t know he had this in August. Over Labor Day weekend he started showing symptoms. He died Oct. 13th. Early testing would have enabled him to counteract it while he still was able.

Darla Kemmerer CLINTON, MS – Because my 46 year old husband has cirrhoses due to untreated/undetected genetic hemochromatosis!

Kristen Merchant BAY VILLAGE, OH – Because I lost my Dad to this DISEASE 15 years ago. He died way too young and had we known more about this disease he would still be with us today. He would have met his grandchild. It’s not too late to save other lives with necessary testing.

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Wendy Bellinger LITTLETON, CO
I was diagnosed at age 63, after years of being accused of malingering, or having fibromyalgia, or just being lazy. A simple blood test, that no doctor had ever ordered before saved my eyesight, my organs and my well-being. No one needs to have a crippled life for want of a simple blood test.

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

John Paulson REDONDO BEACH, CA
Because I have HH and lost my twin brother to it. Unfortunately, the only reason I find out was due to his death. No one should have to go through this, esp when it is just a simple test. Let’s Ironitout!

Amy Zatkoff DAVISBURG, MI
My Aunt Norma Rabideau is suffering because this is not something that was checked.

Darlene Kot WOODLAND PARK, CO
Because our regular doctor was clueless and my wellness doctor questioned my husband’s lab results. He has hemochromatosis and it was discovered at a fairly early stage.

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Bonnie Sayers WEST FARGO, ND
My husband has Hemochromatosis and it would have never been diagnosed early if we had not ASKED for this to be looked into due to reviewing lab reports ourselves. We had to BEG for genetic testing to be done and struggled through the process because early intervention is foreign to the medical community. Both of my husbands parents died at age 57.

Michelle Groman LOS ANGELES, CA
My family found out we were carriers after my uncle died at 47 of HH.

Denise Tiedemann JACKSON, NJ
I have hereditary hemochromatosis, and never heard of it before being diagnosed. I want to make sure as many people as possible who have it get diagnosed early!

Janet Cummins SANDPOINT, ID
I have 2 copies of C282Y gene which took many years to diagnose. My children have at minimum 1 copy a piece. My Uncle died of pancreatic cancer and he had iron overload.

David Mullen CLINTON, MA
Because I have Hereditary Hemochromatosis that was only caught when I went to make a blood donation. The Red Cross noticed my hemoglobin level was high and suggested I talk to my doctor about it. She then ran a couple of tests including iron panel. That’s what led to my diagnosis!

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Debra Lafevers NAPLES, FL
Because my nephew’s father died unexpected 16 years ago, he was diagnosed one year before he died. Now his son is going thru the testing process because he knows, how many of us do not know?? Won’t Get Tested??

Cathy Fortenberry PINSON, AL – I have cirrhosis due to HH.

Danny Drake HOGANSVILLE, GA – My wife and all her siblings have been diagnosed with this condition later in their lives and lived with different symptoms and conditions and were all treated for other diagnosis until my wife was diagnosed and treated and shared with them and asked them to also be tested.

Nancy Gidge ST. LEWIS, NL, CANADA
My spouse has HH.

Mark Thomson AUCKLAND, NEW ZEALAND
Because preventable disease is just that, preventable. What happens in the USA is often reflected in many other nations including my own, New Zealand. Some may argue that”you have to die sometime…” however I think most would agree that to die of a chronic lingering, life sapping diseases is not their preferred option.cropped-images-7.jpeg

Cindy Strickland ANCHORAGE, AK
It’s deadly, silent but so very treatable with phlebotomy and diet.

Joyce Vogler MANASQUAN, NJ
Because my mother died from this, undiagnosed and through the help of my sisters doctor she discovered this gene in our family. Now I know I have it.

Marie Pentland COPPULL, UNITED KINGDOM
I am a carrier and my Daughter is a victim of the overload.

Michele Pearcy SUNNYSIDE, WA
Because this effects my family, and my dad was almost killed by his doctor because they thought he was anemic, thank God they found out it was hemochromatosis instead.61923015

Beth Brewis CULLMAN, AL
I have heritary Hemochromatosis

Lisa Black MORENO VALLEY, CA
My daughter has this.

Jana Skinner SAN CLEMENTE, CA
Because I almost died, and now am handicapped.

Carrie Stsnley MCLOUD, OK
My sister has the condition.

Laura Goodenough HILTON, NY
I was diagnosed with hereditary heterogeneous hemochromatosis too late. Early detection is the key to a full long life.

Antonia Blume SEATTLE, WA
A friend of a friend just died from this disease because of lack of early diagnosis. This is an easy fix– lets do it!

Cheryl Adrian-Chase BILLERICA, MA
To make this be a more regularly tested for condition, My husband has this and we found out by chance while in the meantime he had tough symptoms and no answers until we found out years later by accident.

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

 

Marcy Mnich SAINT PARIS, OH
I fight anemia everyday, on such loads of iron and I never seem to have enough. I’m exhausted all the time. I find this very interesting & feel that these test are so important.62122891

Tina Bryant SUMMERSVILLE, WV
I have hemochromatosis and maybe would have been diagnosed earlier

Joan Gilbert HOLLY, MI
I’m signing because my family is effected by this disease

Carla Florsheim MONROE, LA
I have Hemachromatosis and I want this test as part of my routine blood work!

Denise Prough WANETTE, OK
Someone in my church family has Hemochromatosis.

Carol Far LAKE OZARK, MO
I have HH and know that there are so many others out there that have the same thing and don’t know it. HH is treatable and can save lives if caught before any damage is done.

Julie Sampson IRVING, TX – Because I have Hereditary Hemochromatosis, which could have been diagnosed years ago. Now I have permanent liver and joint damage.

Amy Wyscarver OAK RIDGE, NC
I have the homozygous gene for HFE presented with severe iron overload after CANCER treatment. I am happy to discuss the far reaching implications this has had on my health with a local representative. I am an oncology nurse, cancer survivor and now HFE patient who cares about getting people the correct care they need.images-15

Beth Glover GLENDORA, CA
I’m a CPHON, working with patients with hematologic disorders. Iron overload is a big problem and much more easily treated than even a decade ago. Would be good to screen people early on before permanent damage occurs.

Terry Little CUMMING, GA
Because my husband has it. Because of hemochromatosis, his liver is damaged, his pituitary gland are not working correctly, and his life is changed forever. And it changes our family life, too. Our two boys are now carriers (we tested them when they were young), his brother has it, his parents are carriers. These tests will save lives. Thank you!

Jennie Lever WEST FARGO, ND – My husband was diagnosed after FORCING his dr to do an iron test.

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

Pamela Vanderpool METAMORA, MI
This in my family!

Sherry Hitch ONALASKA, WA
I have Hemochromatosis and if it is caught early you can suffer little to no damage, once you’ve loaded the damage cannot be reversed. The older I get the more pain I have in my joints and body. The amount of damage this disease can do is incredible, on simple blood test can make a difference on life or death!Unknown

Kristin Christ NAPERVILLE, IL
I have been being treated for hemochromatosis for 15 years. It was found “accidentally” with routine blood tests. If they had not found it and treated me for it then, I would likely have irreversible health problems similar to my Father’s.

Marcia Smith SINKING SPRING, PA
Because it can help with earlier diagnoses of some diseases.

Martin Hecht STEVENSON, WA
A very close friend of mine has been diagnosed, and I believe that we can make a difference to save lives.

Mary Welch ROCHESTER, NH
If they don’t look for it then it won’t be found! The symptoms could be easily mistaken for so much else.

Amanda Newman COLUMBIA, MO
I suffer from this disease.

Catherine Tappouni JACKSONVILLE, FL
I’m signing because this disease is easily detectable with a simple blood panel test and could prevent needless illness and death in those who may have it.

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Jo-Anne Lagacé MONCTON, CANADA
I’m signing because I have Hemochromatosis and many families do as well, some don’t know they have it, others think they have it but don’t have the support of their family doctors to have the proper test done.

Donald Longan BERKLEY, MI
I was fortunate to having a Doctor who believed in these simple tests. My quality of life and longevity has been improved!

Ellen Strecker HOLLAND, OH
My friend’s mother died at age 58 from this undignosed disease.

Natasha Hoffmann READING, PA
My father was recently diagnosed with pancreatic cancer, with in that same month I was fortunate to find out that I have the hemochromatosis gene that most likely played a part in my fathers cancer! I have many symptoms and have been chasing my health for the past 4 years, on top of being a new mom. going from dr to dr, lots of cbc s and not one of those tested for iron!!! This could have been figured out along time ago if a simple iron test would be part of a CbC from the start! Please help us so we all can be aware and live a healthier life!

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

Marilyn Bettencourt ORTONVILLE, MI
For my friend Shelly who is diagnosed with this disease.

Kevin Brannigan EAST NORTHPORT, NY
Test from 9/11 study found that I have Hemochromatoisis…  without a doubt saved my life.images-14

Janet Green MANSFIELD, TX
My family is affected by hemochromatosis

Lea Mawhinney LARNE, UNITED KINGDOM
My sister has it :(

Enid Fox SUNNYVALE, CA My mother died in 1977 due to undiagnosed genetic hemochromatosis. Had she been screened, she would have lived until her natural death. She died at age 58, long before her time.

Dayna Hall CLEARWATER, FL
It would have saved me a lot of pain and suffering. We knew no one in my family with hemochromatosis.

Olivia Boatner SAINT JOHNS, FL
My mom has this disease!

Kelly Hankey RALEIGH, NC
I’m signing because my friend’s life was saved by a simple  iron test.

Amy Milroy HIGHLAND HEIGHTS, OH
I, along with most of my family, have hemochromatosis and I am horrified to think of all of the people out there who don’t know they have this deadly disease!

Virginia Mansolillo NEW PORT RICHEY, FL
If it could help with early diagnosis and even save lives, then these tests should be administered.images-6

Shannon Grasso MARTINEZ, CA
I have hemochomatosis and would have found out decades earlier if I had been given a routine iron panel. I am lucky I found out at all (through my own perserverence and out of pocket expense).

Daniel Hillenbrand CHANDLER, AZ
I have HH that has resulted in organ damage, joint damage and overall decreased health and quality of life. Much of which could have been avoided had “Iron Tests” been routine part of basic labs…..

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

lisa lind COMMERCE CHARTER TOWNSHIP, MI
My husband has hemochromatosis

Michelle Sode PRINTER, KY
My best friend had hemochromatosis!

Arianne Cakarnis LAKE OSWEGO, OR
I have HH and it was caught on a full iron panel by a naturopath. Now I have a hematologist I see for treatment. Never before noticed by any primary care doctors..

Sean Woodyard CHICAGO, IL
I have hemochromatosis

Denise Vaillancourt MANCHESTER, NH
My husband found he had Hemochromatosis when he had pain in his foot and bones his was pushing  2200 iron levels. Also when he told his brother to get checked it was too late his was 1800 and had already dying from the iron storage overload.images-7

Roxie Harwell ROBSTOWN, TX
I have hemachromatosis and am tired of the high cost of testing for iron along with the normal test.

Sheri Shoberg EAGLE RIVER, WI
I would have died from Hemochromatosis had my doctor not done these tests. This disease is common and everyone deserves to be tested.

Marianna de Ciutiis REDONDO BEACH, CA
My Uncle’s life could have been saved if the ferritin count was still on the CBC!

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Jessica Quiroz SAN BRUNO, CA
I have a family member that was diagnosed with hemochromatosis

Gina Clinton FUQUAY-VARINA, NC
I’m signing because I carry a diagnosis of hereditary hemochromatosis. I lost two of my grandparents at an early age of undiagnosed HH. Many in my family are carriers and will never know if the proper testing does not take place. I am one of the many faces of this Silent killer!!

Gale Wilcox TIOGA, PA
I have hemochromotosis. It will kill me eventually. It did kill three brothers who were never tested. My father was 36 and died from a massive heart attack and had his first at 17. My one daughter ws tested as a carrier but still has a bad heart and had surgery and many of the miladys wrong with her and the rest of my family come from hemochromotosis. The genetic test should be done also at birth so everyone knows when to start getting tested for too much iron loading and start getting bled. Please pass this bill. Please! One of you may have it and not know it. Now wouldn’t that be something?

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Deana Anderson ROY, UT
I have lost family members that could have been treated earlier and survived had they been tested for hemochromatosis.

Rana Avery ARCATA, CA
Early screening would have saved my life and my health. 51 years with an undiagnosed genetic disorder that could have easily been treated, has destroyed my liver and shortened my life. This should not be happening to anyone in the USA.

Patricia Heckman REDONDO BEACH, CA
I’m signing because I believe it will wake up the world to the actual prevalence of Hemochromatosis.

Beth Biagini PORTLAND, OR
My husband almost didn’t get diagnosed with this hemochromotosis because this test is not on the routine blood panel.

Julie Bialkowski OLD FORGE, PA
My family has high iron and our future generations need this.

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Bethany Dietz METAMORA, MI
My family is being affected by this; this highly treatable, but deadly disease isn’t properly being diagnosed because it isn’t regularly checked for and tests are not being covered by insurance. We need to make this a regular part of our health care regime!

Brent Nuttall PHOENIX, AZ
I was diagnosed in 1997 because it was on the panel now I have to get it special ordered every time I need to check my levels. This affects my family and almost any American.

Beverly Porter LINCOLN, NE
It’s important and I suffer from hereditary hemochromatosis. I feel very fortunate that I accidentally found out my ferritin was high before it damaged my major organs.

Jane K. Collins NEW HAVEN, CT I have HH. I want my family members and others to escape the secondary effects of this disease! IT’S SOOOO EASY, AND INEXPENSIVE!!! Just standard bloodwork can make all the difference, please help.

SIGN PETITION HERE:

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

Colleen Streetman WESTERVILLE, OH
I have a friend whose mother has this disease, please sign the petition to have this simple blood test added to CBC tests.

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Kendra Gillilan PAONIA, CO
We have to pay more just to get iron blood tests and they need to be included!

Tracy Davis CHESAPEAKE, VA
I’m signing because I have Hemochromatosis and because of stumbling upon my diagnosis I was able to urge my sister to get tested. She also has two copies of C282Y which prompted her to have my niece tested. She in turn discovered she has the same two copies. I feel lucky that we know early and can PREVENT organ damage in the future! Prevention is key & you can only do that when you know you are loading iron. A simple complete iron panle would do that.

Brenda Jackson LESLIE, MI – This mutation is running rampant on both sides of my family. We didn’t even know it existed until it was listed on my uncles death certificate as cause of death.

Betty Klingler LAPEER, M
My aunt has this disease and is suffering because of it! I want my husband and children tested, however the test cost to much!

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Trisha Case LAPEER, MI
I can’t believe they don’t routinely test for iron deficiency and overload.

Michele LeBourgeois METAIRIE, LA
I’m signing this petition because I have Hereditary Hemochromatosis and luckily I have a phenomenal physician that looked at my symptoms and researched with testing my iron, iron saturation, serum ferritin and genetic DNA testing. Thank God he did because my body was in iron overload! This is a deadly genetic disorder that, thankfully, I was able to get my brothers and cousins tested to make sure they were checked for this deadly disorder!

Maureen Schwam COMMACK, NY
I have the disease.

R. ALEXANDER CASTLE ROCK, WA
I have a friend that has this. She has already lost one family member. She comes from a very large family with siblings, nieces, and nephews across the United States. It is extremely important that this test be added into the normal CBC testing.

Joan Teti HARRISBURG, PA
I am a carrier of this disease

Diane Terry TIFFIN, OH
I am signing because my covered by insurance CBC panel test quadrupled and insurance will not cover it because it had tests that were separated but taken in addition to the CBC. After I sign this, I’m going to look at my test results again.iron-overload-1-638

Thomas Mackert DERBY, NY
I almost died because my Hemochromatosis was so far along by the time I realized something wasn’t right. The late diagnosis also left me with permanent health issues other than the Hemochromatosis that affect my life every day. It would have been caught sooner if this was a part of a standard CNBC blood screen. You are all looking for ways to save money. This will save money in the long run, not to mention save millions from needless suffering.

Rosemary Hampson PETERBOROUGH, CANADA
I have hemochromatosis and I found out I had it by pure luck. I would have died if it wasn’t discovered!

Kelly Greenwald LAPEER, MI
In honor of my family!

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Cindy Britton BROADWAY, VA
I have hemochromatosis

Alissa Kennedy WEST PALM BEACH, FL
Because I have this disorder and I want more to find out sooner then later when it’s to late

Lisa Permar TIFFIN, OH
I have hereditary hemochromatosis. First thing I did, was inform family to be tested , not one of them have “because their Dr. would have known.” I have told them no, because it is not part of the ordinary blood panel. This disorder kills and relatively simple to treat, but only if caught in time!

Megan Rabideau LAPEER, MI
I’m signing because my mother-in-law is suffering from this disease caught too late and the cost of testing for my husband and children is out of our realm of possibility without saving for several months. We need testing as soon as possible to prevent any further damage if they have it.

Sign and share the petition!

ironitout.org Launches Petition To Put Iron Tests Back On Routine CBC Panel Nationwide

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The campaign has begun!!! Here’s you chance to do something meaningful in just a few seconds.

You must SIGN this petition to make a difference. We need 100,.000 signatures to get congress and cms.gov to put us on their docket and get  the public to take notice. This one act of getting iron tests back on the routine panel will save countless lives! Sign and Share because it only takes a few seconds and so many lives depend on it!

Here’s the link to sign the petition!

https://www.change.org/p/www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-government-put-iron-tests-back-on-routine-blood-panel-prevent-8-deadly-illnesses

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