Living with hemochromatosis

Hemochromatosis is more common in people of Northern European descent. It is easily treated but it is something you will have for the rest of your life. Hemochromatosis is often overlooked as a possible cause of death. That is why hereditary hemochromatosis has been called "the silent killer". I just recently learned that is what my father died from years ago. He died when I was 2 years old and so 40 years ago,like today, it went unknown and untreated. So what is it? It is a genetic, metabolic disorder of iron overload of the body. If it goes untreated, it can be fatal because it can cause damage to organs such as your liver, pancreas and heart. To find out if you have it is so simple yet it goes untested unless requested. It is a simple blood test to measure the amount of iron in your body. The blood test is also sent to a special lab, for me it was in Toronto, where they will test for the gene called HFE. Early symptoms of the disorder are easily mistaken for other conditions. The symptoms include fatigue, weakness, joint pain, weight loss, thyroid problems, abdominal pain, decreased sexual drive, change in skin color, increased urination, arthritis, especially of the knuckles of the first and second finger, and thumb. Many complications can be treated or prevented, but early diagnosis and therapy is the key. If you find out you have hemochromatosis early then the treatment to control the disorder is not that bad. You have to watch your iron intake in your diet and vitamins. Taking vitamin C can cause you to absorb more iron in the foods you eat. So vitamin C is to be avoided. Raw shellfish, especially oysters, carry a bacteria called Vibrio vulnificus that can be deadly to people with iron overload because it thrives on iron. Even handling raw shellfish can be dangerous if there are any breaks in the skin. Alcohol enhances the absorption of iron and so no more than 4 drinks a week should be taken as long as there is no liver damage. However red wine decreases the iron absorption. Red meat, especially organ meats and venison, have the highest iron content so they should be eaten in moderation. If your iron levels are very high then you have to have a phlebotomy done. This means they take blood from your body, just like going and donating blood. They will remove one pint of blood weekly until the iron levels are at a safe level. Then you will have to go every 3 to 4 months to have it done for the rest of your life. If you watch your diet and have no organ damage then you may not require that many phlebotomy's be done. Other tests have to be done to check for organ damage to your liver or heart such as a liver biopsy or a CT scan or MRI. If it goes untreated you can develop cirrhosis of the liver, liver cancer, liver failure, congestive heart failure or cardiomyopathy ( a disease that affects the heart muscle), diabetes, hormonal problems, sexual problems in both men and women, and an enlarged spleen. As I said I just recently learned my father had this. My uncle and cousin called me to tell me that they were both told they have this disorder and that I should be tested and my children tested. So we go to our doctor and tell her and we were tested and yes I have it and my 3 children have it. Thankfully it was detected early in my children and they do not have to have the phlebotomy done. They have to watch their iron intake now and also have to have their CBC and ferritin checked twice a year. So early diagnosis is the key. I will now become a blood donor on a regular basis now. At least I now know what was causing a lot of my problems and I do not feel like I am going crazy now. But to be fair to my doctor, a lot of the symptoms, such as joint pain and abdominal pain, were similar to my hereditary spastic paraplegia which I also have. So it took a simple blood test to finally help me and my children live a healthy life.