Living With Hemochromatosis

Information About Outcomes

Hemochromatosis can be treated effectively with phlebotomy (repeated blood removal). How well the treatment works depends on how much organ damage has already occurred before treatment begins. If hemochromatosis is found and treated early, complications can be prevented, delayed, or even reversed. With early diagnosis and treatment, a normal lifespan is possible. When organ damage has already occurred, treatment may prevent further damage and improve life expectancy, but it may not be able to reverse existing damage. If not treated, hemochromatosis can lead to severe organ damage or even death.

What To Expect After Treatment

Different people have different responses to treatment. Some people undergoing frequent blood removal may feel fatigued (very tired). People who are in advanced stages of the disease or who are receiving aggressive (very strong) treatment that weakens them may need help with daily tasks and activities.

At first, frequent phlebotomies may be needed for anywhere from 6 months to 3 years. How long this treatment is needed depends on how much extra iron is in the body. Even after this, ongoing treatment may be needed two to six times a year to keep the iron from building back up again.

Ongoing Health Care Needs

Ongoing medical needs may include:

• Continuing phlebotomy
• Taking medicines as prescribed
• Contacting your doctor immediately about new or worsening symptoms, or about possible reactions to phlebotomy treatments
• Following up regularly with your doctor about lab work to check iron levels, ongoing treatments, or annual exams
• Using a diary or log to track iron levels

People having phlebotomies may need to change their usual work times to schedule treatments. They may also need to change work schedules to allow for periods of fatigue, especially when they are having aggressive treatment that weakens them.

Check with your doctor and insurance company about coverage for different treatments.

Screening for Family Members of People With Hemochromatosis

Parents, grandparents, brothers and sisters, and children (blood relatives) of a person with hemochromatosis may be at risk for hemochromatosis. Checking iron levels in the blood of these relatives is advised. Genetic testing may be recommended to show who is at risk for the disease. If a relative has already been diagnosed as having iron overload, a genetic test can show whether the cause is genetic (inherited).