Living With Hemochromatosis

The outlook for people who have hemochromatosis largely depends on how much organ damage has already occurred at the time of diagnosis. Early diagnosis and treatment of the disorder are important.

Treatment may help prevent, delay, or sometimes reverse complications of the disorder. Treatment also may lead to higher energy levels and better quality of life. With early diagnosis and treatment, a normal lifespan is possible.

If organ damage has already occurred, treatment may prevent further damage and improve life expectancy. However, treatment may not be able to reverse existing damage.

If hemochromatosis isn't treated, it can lead to severe organ damage or even death.

What To Expect After Treatment

People have different responses to treatment. Some people who have frequent therapeutic phlebotomy may feel very tired. People who have advanced disease or who are getting aggressive (very strong) treatment that weakens them may need help with daily tasks and activities.

For the first 6 months to 3 years after diagnosis, you may need to have therapeutic phlebotomy often. How long you will need this treatment depends on how much extra iron is in your body.

After the initial treatment period, you may need ongoing treatment two to six times a year. This will help prevent the iron from building up again.

Ongoing Care

If you have hemochromatosis, getting ongoing care is important. Ongoing care may include:

• Continuing therapeutic phlebotomy
• Taking medicines as prescribed
• Contacting your doctor right away about new or worsening symptoms, or about possible reactions to phlebotomy
• Following up regularly with your doctor about test results, ongoing treatments, and annual exams
• Using a diary or log to track the amount of iron in your body

If you need routine phlebotomy, you may have to change your usual work times to schedule your treatments. You also may have to change your work schedule to allow for periods of fatigue (tiredness) or recovery, especially if your treatment weakens you.

Emotional Issues

Having hemochromatosis may cause fear, anxiety, depression, and stress. It's important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

Joining a patient support group may help you adjust to living with hemochromatosis. You can see how other people who have the same symptoms have coped with them. Talk to your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Screening Family Members for Hemochromatosis

Parents, grandparents, brothers and sisters, and children (blood relatives) of a person who has hemochromatosis may be at risk for the disease. Talk with your doctor to see whether your relatives should have their iron levels checked.

Your doctor may recommend genetic testing to show whether family members are at risk for the disease. If a relative already has been diagnosed with hemochromatosis, a genetic test can show whether he or she has primary (inherited) disease.