Help Us To 1,000 Signatures – Sign and Share ironitout.org Petition

This world can make you feel helpless and hopeless. But here’s something you can do we stand up to and stop a killer called iron overload and save lives!

Iron-Overload

Affects 1 in 9, but 8 out of 10 have never heard of it. That ends now!

Sign our petition to put simple blood tests back on routine medical screenings. Once we have enough signatures we take our fight to congress, national media, networks. Take a few seconds to save a life.

Click Here To Sign Petition

15 million carriers, 3 million suffers in USA alone… forgotten, treated too late.

Real people telling you how it is without screening….

“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. Hemochromatosis affects my life every day. It would have been caught sooner with a blood screen.”  – Thomas Mackert, Derby, NY

“I was just diagnosed with HH after suffering for 10 years, and watching doctors shrug their shoulders and thinking I’m crazy.” -Adam Juelich, Green Bay, WI

“I found out I had hemochromatosis by accident, through a genetic test. Had I not been so lucky, I might have never found out until it was too late. Let’s start screening people for iron overload so no one else has to suffer needlessly.”  – Kellie Green, NILES, IL

“I have it, my son is a carrier, my daughter has HH as well as my brother. Simple, SIMPLE blood test is all that’s needed. There are so many that could be saved from devastating health problems if diagnosed early enough. Please sign!” – Carol Far, Lake Ozark, MO

Sign Petition Here

 

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

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.

 

 

 

 

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.

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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.

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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.

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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:

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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.

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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.

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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.

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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

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