Hemochromatosis

GENERAL INFORMATION:

What is hemochromatosis? Hemochromatosis (hee-moh-kroh-mah-TOH-sis), or HHC, is a disease where your body stores too much iron. With hemochromatosis, iron builds up in your heart, liver, joints and other organs. This can cause damage to your organs. If HHC is not treated, it can cause health problems that are serious, even life threatening.

Why does my body need iron?

• The main job that iron has in your body is making red blood cells. Red blood cells carry oxygen through your body. Your body needs iron, but only in small amounts. Too much iron destroys your organs, and can increase your risk of getting liver cancer.
  
  
• Iron is usually balanced in your body. Balance is controlled by how much iron you absorb from food and other sources. The amount you absorb depends on how much your body has stored. If you have enough stored, your body should not absorb any more. With HHC, the body absorbs more and more iron even though it has enough.

What causes hemochromatosis? HHC is one of the most common genetic diseases. A genetic disease is one that runs in families. HHC is more common in men than in women. It is also more common in Caucasians (white people).

What are the signs and symptoms of hemochromatosis?

• People usually do not know they have HHC at first, because signs and symptoms may not happen right away. Signs and symptoms often begin in people between the ages of 30 and 50. Some people do not ever get symptoms.
  
  
• If you drink alcohol or eat a diet high in iron, symptoms of HHC can be worse. Women may have milder symptoms because they lose blood during menses (monthly periods). If you donate blood, your HHC symptoms may also be milder. HHC is usually diagnosed and treated before later signs of the disease appear.
  
  
• Early signs and symptoms of HHC may include:
  
  
  • Lack of sex drive. Males may have impotence (unable to maintain an erection).
    
    
  • Joint pain (most often of the fingers, knees, feet, wrists, back, and neck).
    
    
  • Loss of body hair.
    
    
  • Loss of menstrual periods in women.
    
    
  • Weakness or fatigue (feeling unusually tired).
  
  
• Later signs and symptoms of HHC may include:
  
  
  • Diabetes (blood sugar problems).
    
    
  • Bones that break easily.
    
    
  • Bronze or gray skin coloring.
    
    
  • Female infertility (being unable to have children).
    
    
  • Heart problems.
    
    
  • Increased risk of getting certain infections.
    
    
  • Liver disease and cancer.
    
    
  • Long-term stomach pain.
    
    
  • Pain, stiffness and swelling of the joints.
    
    
  • Tiredness.
    
    
  • Thyroid problems causing hot flashes, weight gain or loss, and tiredness.

How is hemochromatosis diagnosed?

• Your caregiver will examine you and ask many questions about the symptoms you have. Blood tests can tell your caregiver if your body is storing too much iron. A liver biopsy may be needed. During a liver biopsy, your caregiver will remove a small sample of your liver. Tests will be done on the sample to see how much iron is stored in your liver, and if your liver is damaged. You may need many other tests, depending on other health problems you may have from your HHC. Talk to your caregiver about any questions or concerns you have about your illness.
  
  
• It may take a long time for caregivers to find out that you have hemochromatosis. Caregivers may treat illnesses that HHC causes (arthritis, diabetes) and not know that HHC is the cause of these illnesses. If you have a family member with HHC, you may want to talk to a genetic counselor. This caregiver may suggest that you be tested for HHC, even if you do not have symptoms. If HHC is found and treated early, treatment can prevent diabetes, liver disease, or other medical problems. Once these problems occur, they may be life-long medical conditions.

How is hemochromatosis treated? Hemochromatosis can be treated and controlled most of the time. There is no cure for the disease. However, the risk of problems caused by HHC can be greatly decreased with treatment. At first, you will probably be seen in a clinic or caregiver's office. At times you may need to go into the hospital for tests and treatment. Rarely, you may need to have surgery. Your treatment may include one or more of the following:

• Phlebotomy: The most common and the best treatment for HHC is phlebotomy (fle-BOT-ah-mee). This is the removal of blood from your veins. Phlebotomy helps to decrease the amount of extra iron you have in your body. When blood is removed, your body makes more to replace it. You may need to have phlebotomy done often, and for your entire life. You will usually have to go to the hospital, your caregiver's office, or another treatment center to have phlebotomy. Over time, phlebotomy may help decrease many symptoms of HHC. It may help decrease bronze skin coloring, weakness, stomach pain, and tiredness. Phlebotomy may not help other problems, like joint pain, diabetes, impotence, and liver damage.
  
  
• Diet changes:
  
  
  • Seafood: You should not eat raw shellfish and raw seafood. Avoid handling (touching, preparing or cooking) raw seafood. You are more likely to get diseases from germs that may be in these foods.
    
    
  • Red meat: You should limit the amount of red meat you eat. Red meat contains iron.
    
    
  • Alcohol: Try to limit or avoid drinks which contain alcohol. They may increase your risk of new or worsening liver damage.
    
    
  • Supplements: You should not take vitamin supplements (pills) with iron in them.
    
    
  • Vitamin C: You may have to avoid foods and supplements that are rich in vitamin C. Vitamin C increases the amount of iron you get from the foods you eat.
    
    
  • Diabetes: If you are diagnosed with diabetes, you will have to follow a special diet. Ask your caregiver for more information about diets for people who have diabetes.
  
  
• Medicines: The medicines you need may depend on the health problems you have because of your HHC. They may include one or more of the following:
  
  
  • Testosterone: Testosterone (tes-TOS-te-ron) may be given to men to treat impotence and decreased sex drive. It may also help grow back lost body hair.
    
    
  • Nonsteroidal anti-inflammatory medicine: This family of medicine is also called NSAIDs. Nonsteroidal anti-inflammatory medicine may help decrease joint pain and swelling from HHC. This medicine can be bought with or without a doctor's order. This medicine can cause stomach bleeding or kidney problems in certain people. Always read the medicine label and follow the directions on it before using this medicine.
    
    
  • Thyroid hormone: This medicine may be needed if your blood level of thyroid hormone is too low.
    
    
  • Blood pressure medicine: This medicine is used to decrease high blood pressure that may be caused by your diseased liver.
    
    
  • Hypoglycemic medicine: This medicine decreases the amount of sugar in your blood. Hypoglycemic medicine may be given if you get diabetes from HHC.
    
    
  • Heart medicine: This medicine may be given to make your heart beat stronger or more regularly. There are many different kinds of heart medicines. Talk with your caregiver to find out what your medicine is and why you are taking it.
  
  
• Surgery:
  
  
  • Arthroplasty: This surgery is also called joint replacement. Arthroplasty (AHR-throh-plas-tee) may be done to decrease symptoms of joint pain, stiffness, and swelling.
    
    

Where can I go for support?

• HHC is a life-changing disease for you and your family. Accepting that you have HHC is hard. You and those close to you may feel angry, sad, or frightened. These feelings are normal. Talk to your caregivers, family, or friends about your feelings. Let them help you. Encourage those close to you to talk to your caregiver about how things are at home. Your caregiver can help your family better understand how to support a person with HHC.
  
  
• You may also want to join a support group. This is a group of people who also have hemochromatosis. Ask your caregiver for the names and numbers of support groups in your town. Contact the following national organizations for more information.
  • Iron Disorders Institute
    2722 Wade Hampton Blvd., Suite A
    Greenville, SC 29615
    Phone: 1-864-292-1175
    Phone: 1-888-565-4766
    Web Address: http://www.irondisorders.org
    
  • American Hemochromatosis Society, Inc.
    4044 W. Lake Mary Boulevard, Unit 104, PMB 416
    Lake Mary, FL 32746-2012
    Phone: 1-407-829-4488
    Phone: 1-888-655-4766
    Web Address: http://www.americanhs.org
    

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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