1.7 Million Faces Of Iron Overload: Patty Heckman’s Story 10/29/2015

The 1.7 Million Faces Of Iron Overload: Patty Heckman’s Heartbreaking Story of Loss… And Lives Saved!

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Twins John (left) Eric (right) with Dad, John (center)

John and Eric are my twin brothers. Eric died of iron overload aka Hemochromatosis. John lives thanks to Eric. The pain of losing a brother is devastating. As a nurse, it’s even harder since the answers to his survival were close at hand, but hidden from my view by a broken system. Simple blood tests could have caught this disease early when it was very treatable, but the tests are not  part of routine blood screening in America. I’m sharing Eric’s story so that you will help push for change and others will not have to suffer and die.

Everything changed the night of October 24, 2012.

“Eric is dead! Aunt Patty, Eric is dead!” My sister screamed into the phone. She was so hysterical I couldn’t understand her. A minute later my niece called. “Aunt Patty, Uncle Eric is dead.”

My immediate reaction was, “God No! There’s been a mistake.”

My son, James drives me right over to my brother’s house… and sure enough there is the paramedic truck, an ambulance, and policeimages-21. The police won’t won’t let me see my brother. His identical twin, John, is out front with my sister and we are being held off. I can’t believe what I’m hearing. If only I can see my brother everything would be alright.

I can’t remember a worse night in my life. There was no reason, no explanation. The LA coroner would have to give us answers. We’re told it will be months. They are shorthanded and back logged. John, Eric’s twin, and I head home to tell our father. More disbelief. His second child, dead!

As the family and friends gathered to celebrate Eric’s life, we decided to have a second autopsy.

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That one decision literally saved our lives. The LA Coroner came back to us  in January with a cause of death -Diabetes and Ketoacidosis. A week prior to his death, Eric had lab work done showing a blood sugar of 292 and 4+ Ketones. He was given Metformin and told to take half a pill. He left work early because he didn’t feel well and died early the next morning. More questions, no real answers.

Later in February we get the results from the second autopsy: Hereditary Hemochromatosis!

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Doesn’t that mean we could all have it? Hereditary means it was passed on to us. There was a good chance another one or two or three of us has it. There were 6 of us after all. Not only us, but 30 cousins could also have it. Have they had problems? Has anyone else died?

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Wait, Cousin Jinny died of liver cancer and Cousin Jimmy died of a liver related illness as well. I remember from nursing school that Hemochromatosis is a condition where the body retains iron in the organs.

I need to get the word out. I call some and I email others. I Facebook as many as I can. At one point I spoke with my Dad’s sister, who told me she got checked. I asked her if she was a carrier and she stated to me that her doctor told her her Hemoglobin is 14 and she was fine. I tried to explain to her that she may be fine, but her 2 boys could be at risk.

All of my siblings are carriers. John, Eric’s identical twin, has the disorder and is positive for two copies of the C282Y mutation in the HFE gene. He was found to have a ferritin level of over 6000. (very high danger zone) A normal ferritin range is 20-220. organ damage sets in above 1000.

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The second autopsy showed Eric to have iron deposits in his pancreas, liver, adrenal glands, thyroid, heart and lungs.

But what does it mean and how does it kill?

Hereditary Hemochromatosis is a hereditary disorder of metabolism involving the deposition of iron containing pigments in the tissues that is characterized especially by joint or abdominal pain, weakness, and fatigue and that may lead to bronzing of the skin, arthritis, diabetes, cirrhosis, or heart disease if untreated.

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The Mayo Clinic further defines HH by stating it causes your body to absorb too much iron from the food you eat. The excess iron is stored in your organs especially your liver, heart, and pancreas. The excess iron can poison these organs leading to life threatening conditions such as cancer, heart arrhythmias, diabetes and cirrhosis.

Because it is an autosomal recessive condition, siblings of individuals who have HH are at a 25% risk to also be affected. Blood studies should include transferrin iron saturation and ferritin concentration to confirm the diagnosis. Genetic testing became available in 1996 and is a reliable method of diagnosis. This is the same year Medicare stopped paying for Ferritin levels on a Complete Blood Count. They unbundled the tests, essentially dooming countless lives and setting back diagnosis and adding to healthcare costs.

The first signs of symptoms are often from organ damage. They include; joint pain, diabetes, loss of sex drive, impotence, and heart failure.

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I believe the first signs my brothers encountered were the bronzing of their ankles and toes. They each went to a dermatologist and they were each given “salve” to put on the rashes. The first doctor I spoke with about Hemochromatosis was my dermatologist. I gave him 2 books I found very revealing on the subject. He stated to me he read about Hemochromatosis during his medical training, but hadn’t given it much thought until he saw me reading “The Bronze Killer” by Marie Warder.

This was a very common statement from physicians I have spoken to about this disorder. My brothers also presented with early hair loss and periodontal disease. Each of these symptoms was attributed to familial traits rather than specific symptoms of HH. We had no idea what the totality of symptoms meant.

Iron overload diseases afflict as many as 3 million people in the USA with 1.7 million undiagnosed and 1 million diagnosed too late or only after life threatening illnesses have set in.

Men and women are equally affected by HH and most commonly presents in patients between the ages of 40-60 years since it takes many years for the body to accumulate excessive iron.

Diabetes is present in up to 60%-80% of Hereditary Hemochromatosis patients and is often the initial manifestation of the HHC disorder. It usually precedes the diagnosis of hemochromatosis. The pancreas can acquire an iron load of as much as 50 times normal.

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“Iron accumulation has been correlated with retinal neurodegeneration.” “In age related macular degeneration, increased levels of iron have been found on autopsy in AMD affected macula’s as compared with normal maculas.” Macular degeneration is the leading cause of blindness in people 60 and older.

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“The accumulation of iron in the brain can cause early on-set of Parkinson’s Disease along with other neurodegenerative diseases like Alzheimer’s, amyotrophic lateral sclerosis, epilepsy, and depression.” Too much iron in the brain causes changes in the vascular capabilities.

“For more than 70 years evidence has been accumulating that elevated iron initiates and promotes cancer cell growth.” In addition to initiating the cancer process, iron can bolster the growth of cancer cells by suppressing host white blood cell defenses.  Liver and colon cancer have been found at a higher rate in individuals with HH.

The treatment for iron overload, although it can be grueling, is rather simple. One simply donates a pint of blood. The frequency is determined by how high the ferritin and iron saturation levels are at the time of draw.

Eric’s identical twin, John has given a pint of blood a week for over 19 months. His hemoglobin has changed from 16 to 14, but has not varied any further. He has continued to work a full time job, engage with family members, and live life as an active participant. He looks great, and we never thought he looked ill, but of note is that the gradual change in appearance and the gradual degradation of health can be easily dismissed as normal affects of growing older.

images-11As for Aunt Dorothy, I explained to her hemoglobin is not an indicator for HH. Physicians repeatedly have used this test to put other family members as ease. My Brother John’s hemoglobin after a year of weekly phlebotomy has not strayed from 14. We have found physicians don’t know what tests to order.

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Please don’t let your physician off the hook by telling you that you are fine after a normal hemoglobin test was performed. Ask specifically for a Ferritin level and an Iron Saturation percent.
My brother was 47. At autopsy he was found to have iron in several organs. Weeks before his death he had complained of fatigue, thirst, and shortness of breath when climbing stairs. He saw his physician and had labs drawn 1 week before he died. I wonder if his physician had put the symptoms together, if he had noticed the blood sugar and ketones, the elevated liver functions, could he have done something to save him. He needed early diagnosis with tests that should be on the routine blood panel nationwide.

Probably not, I am resigned to this outcome, but can I wake up others in time? This is a recurring theme in my mind and in many of the articles I read and stories I’ve heard.

I want to raise awareness, educate physicians and patients, and inform families of this disorder and how it can take a life, devastate a family, and go unnoticed time after time. It is apparent to us the symptoms are acover_art_for_website_t837ttributed to further destruction of the organs. In other words, diabetes, cancer, cirrhosis, and other diseases are diagnosed instead of the underlying cause, which is HH.

“The removal of serum iron and ferritin from routine blood chemistry panels closed the window of opportunity for early detection.” “Millions lost the added benefit of discovering elevated iron early enough to intervene with preventive and treatment measures..” My brother was one such person.

John is doing well. His ferritin is down to 80 after 19 months of weekly phlebotomy. His liver functions and glucose are normal. We are all being tested for iron levels every 6 months to 1 year. Even though my sister and I are only carriers, we have noticed that our ferritin level and iron saturation are higher than last year. We are going to donate blood. We are testing our children to see if they carry the mutated genes. So far, my oldest son and his wife are carriers. Their oldest son, JT is positive for HH at 6 years of age.

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Our precious JT is HH positive – but will be monitored and get a full life!

My brother was not in poor health, have any medical issues or medical history. He was as normal as you and me. If it can kill without notice at 47, don’t you want to know more? A simple CBC with Ferritin added could have prevented this and there is no reason it can’t be done in the USA, as it is done in other countries.

We had known that my daughter in laws father had died at age 48 from a heart issue, but didn’t put it all together until we tested the 7 year old. Last week we found out that his brother (the uncle) was just diagnosed with HH. It’s becoming a puzzle that we continually need to put together.  I believe my Mom had HH. She declined in her 60’s with fatigue and joint pain. Then proceeded to get Parkinson’s and dementia. Classic female HH. My sister Kathy is a carrier, her husband Gary is not. When we diagnosis one person early, it can have an echo effect of healing throughout an extended family.

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Please at a few seconds to sign and share is incredibly important petition to get iron tests back on the CBC blood panel. It will save countless lives. Click thru the link below:

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

Thank You, Patty Heckman, www.ironitout.org board member.

 

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

Iron Overload: Body Count Keeps Rising: 15-yr-old WSJ Article Highlights How We’re Still Running In Place Today

Demand Change, Work For Change, Or People Will Keep Dying!

As an action network, ironitout.org wants everyone to know about hemochromatosis  and learn where the USA stands right now on early diagnosis, treatment and awareness of this deadly but very treatable genetic disease.

Plain and simple, we’re stuck in first gear while people keep suffering and dying. Funding is less than it was 15 years ago, Simple, inexpensive screening exists, but since it is not routine, diagnosis remains largely a catch as catch can proposition. While iron overload has seen some increased awareness thanks to the Iron Disorders Institute and medical education, a recent scientific poll of 1000 adults, commissioned through a data polling firm found that 8 out of 10 people still don’t know what hemochromatosis is. We’re failing to become a household name., We’re failing to drag this disease into the light and see early diagnosis become routine.61839137-1

To highlight this, we’ve taken a 15 yr old article by the Wallstreet Journal, and added in red sections by our research team to demonstrate what has and has not been accomplished in the years since. How and why we’ve made some little progress. When you read the statistics and research in red you’ll see that there’s a lot left undone. We are not throwing stones, but no one is calling it like it is… the truth is we are losing this battle and it’s time to take a new, action based, aggressive grass roots approach!

WSJ -Iron Overload

By CAROL GENTRY
Updated March 19, 2001 12:01 a.m. Note the date, this article is nearly 15 yrs old.

Feeling tired and achy? Don’t shrug it off as age or stress. Above all, don’t start taking iron. That could make it worse. As of Oct. 2015, there are no warning labels on vitamins and supplements regarding the damage iron can cause to people with hemochromatosis. This needs to change. There’s no widespread campaign to educate pharmacists and the medical community to the risk iron supplements pose to undiagnosed iron overload patients and many diagnosed ones. FerritinFeature

Medical researchers are learning that many adults have a genetic mutation that causes their bodies to absorb too much iron. The substance silently builds up in organs and joints until midlife, when the damage begins to reveal itself. Iron can begin loading at any age, the mutation is present at birth, making the need for widespread screening in childhood crucial offer monitoring, head off damage and mitigate treatment costs.

The disease, hereditary hemochromatosis, afflicts more than one million Americans,  Closer to 3 million in 2015 with 1.7 million undiagnosed and 1 million diagnosed too late making it the most common genetic disease in North America. It can be detected with an inexpensive blood test, and the damage is preventable, yet most cases are never properly diagnosed. Because we still lack a proper screening program 15 years later!

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“Many diseases attributed to middle and old age are actually symptoms of hemochromatosis,” says Sandra Thomas of Daytona Beach, Fla., president of the American Hemochromatosis Society, a support group. “People in their golden years could have a better qualify of life if they were diagnosed and treated.”

Even though hereditary hemochromatosis is common, most doctors never diagnose a single case because they aren’t looking for it, says Vincent J. Felitti, director of the Department of Preventive Medicine for the Kaiser Permanente health plan in San Diego. Since Kaiser-San Diego began screening adults for iron overload three years ago, it has found 500 cases; Dr. Felitti expects to find an additional 1,400 or so among the 500,000 Kaiser Permanente patients in San Diego. Dr. Felitti’s words and recommendations quoted in this article, and his praise of the diagnosis results of the only large population screening program in the country, refute a 2001 Scripps Research Institute Report which was controversial and caused heated debate within the medical community. He was one of four researchers on that flawed study – which recommended against universal screening. Using self-reported questionnaires from patients – known to have low confidence/validity in terms of usable data – and a test group in which many members had already been through phlebotomy treatment, they concluded that while a large number have HH, equal to that of diabetes, it only causes damage in 1 percent or less. In more current large population based studies worldwide, 50 percent of those with the mutation load iron, with 2/3’s developing disease. This places damage/real world health risks at 35 – 45 percent, NOT 1 percent. Unfortunately. The Scripps study has been used for 15 years, and guides many doctor’s actions on diagnosis and treatment even today. It is listed on many physician recommendation websites still. The study discounts the need for screening and falsely broadcast that HH was nothing to worry about, even while the American Medical Association and Academy of Pathology stated that having serum iron and ferritin blood tests back on the routine panel would increase diagnosis 20 fold. Reality Check: A pharmaceutical company is currently trying to develop a pill form treatment for iron overload, clear indication that a large number of the population are at risk. They do not spend time and money developing pills for a disease with a 1 percent illness penetration. The pharmaceutical company quotes at least a 25 percent penetration of illness.

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“The fact is, every practitioner in the country sees a case every two or three weeks, only they’re not recognized because they come in disguised as something else, or symptoms haven’t developed yet” Dr. Felitti says. It’s every 9 days in 2015.

Patients come in complaining of chronic fatigue, stomachaches, joint pain, heart palpitations, impotence or depression. After the usual medical workups lead nowhere, puzzled doctors often send the patient home with a prescription for Viagra or Prozac. But the iron, undetected, keeps building up in the organs and joints, leading to arthritis, diabetes, heart arrhythmias, cirrhosis of the liver and certain cancers. Iron tests put back on the CBC panel and education in the medical community/low evidence threshold for suspecting iron overload would clear up this “mystery” and save lives through early diagnosis.

The irony is that both testing and treatment for iron overload are simple. A “transferrin saturation” test that shows whether excess iron is being absorbed adds only a few dollars to the cost of a routine blood test, Dr. Felitti says. A genetic test that identifies 85% of hereditary hemochromatosis patients is available, and though it isn’t necessary for diagnosis or treatment, it’s useful in helping relatives learn they have the disease before they develop symptoms. The 1998 decision to unbundle serum iron and ferritin from the routine CBC panel closed a window for early detection/ diagnosis. Putting these tests back makes medical sense and would not only increase detection of iron overload, but Wilson’s disease, anemia, cirrhosis, diabetes and Rheumatoid arthritis. Far from a cost savings the move increased healthcare costs. Before unbundling a blood chemistry panel that included iron tests and a complete blood count cost $100. After unbundling, the same set of tests done separately cost patients $400. The cost savings argument for unbundling is moot. Doctor awareness has been on the rise since 2001. If  overworked doctors had ferritin tests back on the initial blood test screening it would cue them to test for HH. 

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Treatment is simple: regular blood draws. When serious iron overload cases are first caught, experts say, the patient may need to give up one or two units of blood a week. Once the iron level drops to normal, blood is drawn about once every three months. In May of 2015, ironitout.org with other advocates were successful in getting the FDA to lift all waivers and variances/restrictions on HH blood donations for transfusion. Now it is up to us to get hospitals, blood banks and the Red Cross to begin taking the blood rather than throwing it away.

Hemochromatosis can be the result of environmental factors — it often occurs in Africa from cooking in iron pots — but the hereditary form of the disease is more common in Europe and the U.S., with a prevalence of about four cases per 1,000. Fully 12% of the population are carriers of one, but not both copies, of the defective gene necessary to develop the disease. Carriers can and do load iron, so the population at risk is 30 million. They should be tested for iron overload/ferritin count annually. Currently, many doctors tell carriers “there’s nothing to worry about and take no additional steps.”

The disease isn’t caused by eating iron-rich foods, but by over-absorbing the iron in a normal diet. Iron overload occurs because the defective gene interferes with the normal function of the intestinal lining and allows too much iron to pass through to the bloodstream, where it is carried to certain organs that are sensitive to it, especially the liver. The iron causes inflammation, which damages the organs.

Many patients go for years thinking their symptoms are due to stress. Harry Kieffer of Cordele, Ga., got that medical assessment when he saw his doctor due to fatigue, joint pain, irregular heartbeat and migraines. It was easy to believe; as production manager for a new building-products plant, he was working 60 to 80 hours a week. “During this whole time, we took stress-formula vitamins with iron,” says Mr. Kieffer’s wife, Chris. “We thought we were being good to ourselves, but were compounding the problem.”

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The American Academy of Pathology in 1996 called for doctors and hospitals to run iron-status tests on all new patients, but there has been little movement in that direction. Officials at the Centers for Disease Control and Prevention say there must be better safeguards in place to prevent discrimination by insurance companies before widespread screening can begin. Safeguards are in place. Since 2001 countless deaths and chronic illnesses could have been prevented. Hospitals ran those very tests prior to 1998 with no issues. The tests were removed for questionable financial and political reasons, not medical ones. It’s criminal and barbaric that these tests are not standard. We need a full, grass roots campaign directed at cms.gov and medicare, to get the tests back on the CBC panel.

ironitout.org is leading that campaign.

But they say anyone who shows symptoms, or has a relative with the disease, should ask for a test. 75 percent of people with HH don’t show symptoms and of those with symptoms, 80 percent are misdiagnosed. You can’t ask the patient to be the doctor… This is why iron overload remains a silent killer today. Only standard screening with ferriten tests and a massive awareness campaign coupled with doctors pushing for early diagnosis will work.

ironitout.org action projects include:

  1. Grassroots campaign to get ferritin tests back on CBC panel – including petition, congressional pressure, email  campaign to panel gatekeepers, media PSA’s and public out cry.
  2. Campaign to get hospitals, blood banks and red Cross taking every pint of HH blood donated for transfusion. In the vein not down the drain.

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Here’s how you can support the projects:

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

Making It Personal/Sharing It Global – Your Iron Overload Stories/Video Clips!

Here’s your chance to give a wake up call to the world!

images-1Help ironitout.org drag this deadly, treatable, rarely diagnosed in time genetic disorder, into the light. Let’s turn our stories into viral video megaphones and noncommercial  social media PSA’s for awareness and change!

Make a video clip about your journey, about family members, friends, co-workers. Make it a battle cry for people in your life who have died and/or suffered years of chronic illnesses from hemochromatosis. Give them a voice by using yours to tell their story. Make it a tribute, make it a legacy, make it a story of hope. Don’t keep these stories inside your heads and buried, telling them through this campaign will save lives!

Video clip guidelines:

  1. Title it “Hemochromatosis Wake Up Call – The 1.7 million Faces Of Iron Overload”
  2. Make it simple, shoot it with smart phone, iPad etc. check out examples at ironitout.org
  3.  Tell us who you are, family is/was hobbies, passions, where you live, career,  then talk bout the disorder. Your journey – how you were diagnosed, symptoms, damage, how old you were and how long it took to be diagnosed, treatment,  how you are doing today. Any family with a diagnosis.
  4. upload it to youtube.com
  5. Send us a write up with images and photos of you, family etc. email to mtcowboy@teleport.com

Here’s a great example of a submission we helped edit, expand and feature:

http://ironitout.org/the-1-7-million-faces-of-iron-overload-tim-jones-story-and-video-clip

If you simply want to write up your story with photos, we, at ironitout.org, can turn it into a  video clip. Just send whatever you have and we’ll edit, expand and work with you to feature it in the campaign.

 

 

1.7 Million Faces Of Iron Overload: Tim Jones Story And Video Clip 10/19/2015

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Tim Jones here. And I’m one of the 1.7 million faces of hemochromatosis in the USA. I’m 50 years old, a jack of many trades, currently working in an engineering office doing design work, for building bridges, dams, warfs, trestles. I live in the Pacific Northwest with my wonderful wife, Pamela Love Jones. And I’m a new dad to an 18 month old girl, who is my pride and joy!

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I don’t think I would be here for her if I was not diagnosed in time.  I was diagnosed late 2012, ferritin (iron level) well over 1,200. I had suffered for years prior and told I was just getting old. I’d always been an athlete so I tried to brush it off.  I had been a regular donor to the Red Cross and they would tell me my iron levels were high, but no one ever told me to get it checked out or what I had. Bouts with pneumonia, brain fog, weight gain, swollen liver, being accused of being an alcoholic, the list goes on and on. I was not in good shape and getting worse. In my late 20’s was the first time I started noticing a trend in my health, I would be well for awhile and then sick or lack energy. I went to doctors and they would tell me that they couldn’t find anything.

Now, with HH under control, I enjoy life again. I’ve gotten a second chance. Last year was the first year that I did not get very ill from a cold, influenza or bronchitis. As a lifelong athlete, I’ve  started working out again and loving life like never before. I do Crossfit now. I am a Masters Athlete. I did what is called the Crossfit Open last year for the first time. Over 275,000 people signed up for this event, making it the largest individual sporting event in the world.  Not wanting any others to go through what we went through, I want people to hear our story and drag this deadly, but treatable disease –  if diagnosed in time – into the light.

Early diagnosis is the key. Spread the word, push your community for more awareness, universal screenings, iron tests back on the CBC panel, use of the donated blood to save the lives of others, and we’ll drag this nearly silent killer into the light and stop it in its tracks.

More info and action campaigns which you can donate to and get involved with at ironitout.org/support

ironitout.org wants to thank Tim for his heartfelt story and his generosity in sharing it for our PSA/noncommercial campaign to build awareness about iron overload.

Now it’s your turn.  Worldwide, we’d love to hear your story, or the story of your family members, friends, co-workers.  Make a video clip that starts, “My name is ______ and I’m one of the 1.7 million face affected by hemochromatosis!” Then tell the highlights of your story, it does not have to be polished. Just tell your story from the heart, then upload the video to youtube.com and send addition written info to mtcowboy@teleport.com  and like Tim’s story here, we’ll do the rest. Don’t know how to make a video? Ask a friend, family member adept at social media to shoot  a short clip of you. Or just send a write up of your story and some images and we’ll put it together and add you to the campaign.We can always update and add to it so video can be added to a written and photo story.