National Organization for Rare Disorders (NORD)

My father died in 2011 from a rare genetic blood condition called "classical hereditary hemochromatosis", which is caused by mutations of the HFE gene. This hereditary condition causes iron to be stored in the body instead of being released through waste. Visible symptoms are iron leaching through the skin, which looks like an orangish brown rash. Their skin starts looking orange in the face. People with hemochromatosis should not eat any iron rich foods (including red meat) because they cannot pass the iron, so it stores in the body. This excess iron is stored in major organs, especially the liver. When we learned that my father had hemochromatosis, he had to go weekly to the doctor's office for routine blood transfusions. However, the doctors did not diagnose my father in time before some real damage had been done. Over a period of years, the stored iron can cause severe damage that may lead to organ failure, cirrhosis, diabetes, pulmonary fibrosis, and/or heart failure. On May 6th 2011, my father died from hemochromatosis caused cirrhosis of the liver and pulmonary fibrosis. I miss him terribly, now and forever.