Hereditary Hemochromatosis is too much iron in the human body. It is the equivalent to a rusty boat sunken at sea. At sea rusticles are formed as the wrought iron begins to oxidize in the water.  It is a bacteria slowly eating away at the metal. Too much iron accelerates mitochondrial decay and inflicts system-wide free radical damage to healthy tissues. Oxidation caused be too much iron is eerily similar to rusticles slowly eatin away metal under water. Imagine having a knee or wrist caked with rusticles? It doesn’t work well when used because there is swelling of inflammation in the synovial fluid inside a sack surrounding each joint.  When the pain becomes too bad joint replacement removes the old rusted joint replacing it with an artificial joint. How about a brain filled with rust? It is not able to function well cognitively. The nerve cells are covered with rust eliminating the nerve pathways. Often times Hemochromatosis is discovered in the brain during an autopsy.

Many years ago I began storing iron rapidly despite dietary changes; removal of all alcohol, red meat and foods enriched with iron. My life as a rusticle has been a painful one. All joints are inflamed. I live with chronic severe asthma ( just as my father did…..). It scares me. My mother has dementia. That also scares me.

The funny thing about the metabolism of iron overload disease, the movement of iron within the body. It travels among the soft tissue; joints, brain, arteries, heart muscle, etc. causing unseen damage or death. Heart attacks and strokes (more common in the gene type I have- H63d homozygous) can be caused by iron stores within the body.  I ran into a maternal first cousin who was talking about his knee replacement. I attempted to discuss Hereditary Hemochromatosis with him but he didn’t want to hear about it. He didn’t take me seriously. Just as my own family has done despite providing proof via my genetic testing along with an easy to read book about Hereditary Hemochromatosis.

Having a genetic disability is something I could have easily chosen to treat quietly and not share. I chose to share the disability in an effort to save lives. Once you begin telling lies, then the un-truth takes a life of its own. The next generation begins getting sick from too much iron. My 3 children each carry one defective gene. My nieces and nephews also may have one or two defective genes depending upon the any paternal defective gene mutation. That alone won’t cause problems assuming they only carry one defective gene for Hereditary Hemochromatosis. It’s their children that we should be concerned with.

It time to tell the truth and stop glorifying a lie. Read this post WASHINGTON POST ARTICLE  My initial symptoms were similar when I was first diagnosed. It explains why everyone ran away.  I was too tired, depressed from having an undiagnosed illness. Mental health still carries a very heavy stigma? It shouldn’t be treated as something shameful. Yet it is.  Twenty years later not a single one of my siblings have inquired about my health. This includes 2 separate cancer diagnoses.  Are they afraid HH is psychiatric and not a “real” disease? I guess I will be attending funerals sadly.


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