Hemochromatosis

Survival rates

If hemochromatosis is caught and treated early, before it causes serious damage, you often can live a full life. But if left untreated — especially if it leads to advanced stages of liver scarring, called cirrhosis, or heart conditions — life can be significantly shorter.

Many factors can affect how the condition progresses, also called the prognosis.

• Sex assigned at birth. Males tend to get symptoms earlier and have more severe complications.
• Age at time of diagnosis. Getting a diagnosis at the age of 56 or older is associated with a worse prognosis.
• How much iron has built up in the body. If your serum ferritin level is less than 2,000 micrograms per liter at the time you're diagnosed, your lifespan is likely to be similar to that of the general population.
• How early you're diagnosed. If phlebotomy treatment starts before cirrhosis or diabetes start, you often can live a full life.
• If you have cirrhosis. If you have cirrhosis, especially if it's at an advanced stage, it's associated with a worse prognosis and shorter lifespan.
• Inherited HFE gene mutation. The risk of death from a type of liver cancer called hepatocellular carcinoma is higher if you have hemochromatosis caused by the HFE gene. However, your risk of this type of cancer is highest if you already have cirrhosis.
• Alcohol use. When you have hemochromatosis, use of alcohol increases the risk of death. Alcohol may increase blood-iron level.

Phlebotomy treatment itself improves survival, even if you have organ damage. And with treatment, some organ damage is reversible once iron is removed from the body. Cirrhosis usually does not reverse, but liver scarring may improve. And treatment can slow or reverse other complications, such as diabetes and other liver disease.