Hemochromatosis happens when too much iron builds up in the body. Your body needs iron to make hemoglobin, the part of your blood that carries oxygen to all of your cells. But when there is too much iron, it can damage the liver and heart and lead to other diseases, such as diabetes and arthritis.
Hemochromatosis can be treated to prevent serious problems. But without treatment, hemochromatosis will continue storing iron in the body. When iron levels are dangerously high, organ and tissue damage can happen.
When you have paroxysmal nocturnal hemoglobinuria (PNH), red blood cells in your body break apart before they should. Your immune system attacks the red blood cells and breaks them down. It happens because the proteins that would normally protect them from this damage are missing.
You can get this rare blood disease at any age. You aren’t born with it. Although it can be life-threatening, treatments can help you feel better and control some of the complications of PNH.
PNH affects everyone differently...
Men are more likely than women to have too much iron built up. Women get rid of extra iron through blood from their menstrual cycles and during pregnancy.
What are the symptoms?
Symptoms often don't appear until a person is age 40 or older. This is because extra iron builds up slowly throughout the person's life. And symptoms appear after a certain amount of extra iron builds up.
The early symptoms are somewhat vague or subtle. So this disease is sometimes mistaken for another condition. Early symptoms include:
Your doctor will do a physical exam and ask about your medical history. If the doctor suspects hemochromatosis, you will have blood tests to see if you have too much iron in your body.
Most of the time hemochromatosis is caused by a gene that runs in families. It is an autosomal recessive disorder that can be passed to a child from the parents. Hemochromatosis can be found early with a blood test. If you have this disease, you may want to have your children tested to see if they have it. Other family members may also want to be tested. Talking to a genetic counselor will help you decide whether genetic testing is a good idea for you and your family.
Most medical experts do not think it is helpful to screen for hemochromatosis in the general population using blood tests or genetic tests because hemochromatosis is not common. The U.S. Preventive Services Task Force (USPSTF) does not recommend genetic screening for hemochromatosis in the general population.1 The general population includes people who do not have symptoms of hemochromatosis and who do not have a parent, brother, sister, or child with the disease.