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). |