I was diagnosed with Hemochromatosis in 1979. But my story pales in comparison to the many folks I have met on the Net who have been diagnosed with iron overloading from genetic Hemochromatosis. I believe the real story is why is it that so many people have to endure indignation, humiliation and rejection for as long as 3 - 5 years before getting a correct diagnosis. Oftentimes, it takes longer. The irony (no pun intended) is that the diagnosis requires nothing exceptional, merely available blood tests for excess iron and iron stores. The treatment is relatively simple and will prevent severe morbidity if diagnosed before the accumulated iron stores have had an opportunity to damage vital organs.
Hemochromatosis could be the epitome of preventive medicine; even the Surgeon General has said so. Yet an extremely large portion of the medical community is totally unaware of its penetration in the American population. I have been meeting people interactively for the past 5 -6 years who are plagued with a myriad of complications resulting from excessive iron store and delinquent diagnosis. The primary problems due to a late diagnosis seem to be liver failure and arthritis or joint replacement. Serious heart conditions run a close second. Misdiagnosis run amok because the underlying cause is identified to late, or never recognized. Damaged organs, such as the liver and the heart, along with diabetes and severe arthritis can all be attributed to iron, most of which could have been prevented had the iron been removed early enough. There is much evidence indicating that many cancers thrive on iron. Iron reduction would probably reduce the severity of these types of cancers. In some cases, might even prevent cancer.
As a community, we have nicknamed ourselves "Rusties" because of the joint deteriorate due to excess iron. In other words, many of joints are rusting out! Diagnosed early, with subsequent treatment consisting of frequent phlebotomies, an individual with Hemochromatosis can live a relative normal and productive life. I was diagnosed early as a result of an autopsy on my younger sister who died in 1975. The original autopsy identified "chronic alcoholism" as a contributor to my sister's death. But, my sister did not, nor could she, drink alcohol as just the odor of a single beer made her nauseous. When the pathologist revisited the autopsy, lo and behold, he located the real culprit -- iron. As a result, another sister and I were fortunate to get an early diagnosis.
Even more fortunate was that each of our doctors was extremely cognizant of what needed to be done. Uncommon today, but a true rarity 26 years ago! I am alive and healthy and able to see my grandchildren grow because of my sister's death 26 years ago. I'm also fortunate that I do not have to take any medicine, not even aspirin. My wife and I raised six children, all of whom are carriers, subject to iron overloading. I also have two grandchildren who are also carriers and a granddaughter who is a compound heterozygote, which is the closest thing to being like me - a homozygote. My tale is probably interesting, but I feel strongly that I am the exception with regards to my health in association with Hemochromatosis.
Another irony is that there are probably more than one million Americans who are homozygous for Hemochromatosis and are completely unaware of the impending fate that awaits them. The Center for Disease Control has some staggering statistics, which are more severe for the Celtic or Irish American populations. The real story is why is it these people have to suffer needlessly, when many of their medical problems could have been prevented. Believe you me: Those stories are waiting to be told. Educating the medical community would be a fantastic beginning! They could begin with the following presentation to the CDC: http://www.ironoverload.org/cdcppt/index.htm.
Thank you for listening. Sincerely yours,. Jim Hines AKA "The Rusty Curmudgeon"
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