Living with aplastic anemia

The U.S. government's National Heart, Lung, and Blood Institute (NHLBI) offers the following guidelines for people with aplastic anemia in how they can lead their lives on a daily basis, in addition to medical treatment:

Recommended Physical Activity

Your doctor might discuss what type and amount of physical exercise may be helpful. For example, you may need to avoid activities that cause chest pain or shortness of breath. You may want to stay away from activities that could result in injuries and bleeding, such as contact sports.

Protection From Infection

Your doctor also might discuss ways to reduce your chance of getting an infection. These ways include staying away from people who are ill, avoiding crowds, and avoiding certain kinds of foods that could expose you to bacteria (for example, uncooked food can be a source of bacteria). You may be advised to wash your hands thoroughly several times throughout the day and to care for your teeth and gums to reduce the risk of infection in your mouth or throat.

It is important to know the signs of infection, such as a fever. Call your doctor at the first sign of an infection.

Support Groups

You or your family members may find it helpful to know about resources that can give you emotional support as well as helpful information about aplastic anemia and its treatment. Your doctor or hospital social worker may have information about counseling and support services. They also may be able to refer you to major support organizations that offer help with financial planning, since treatment for aplastic anemia is expensive.

The Aplastic Anemia & MDS International Foundation, Inc. offers a variety of services and information, including:

• Emotional support through a toll-free hotline (800–747–2820), e-mail, and numerous local support groups
• Educational materials and newsletters, including some on their Web site
• Questions answered by people with aplastic anemia and their family members
• Information on clinical trials and financial help for travel expenses to take part in a clinical trial
• A patient registry

The National Marrow Donor Program gives information and help to bone marrow donors and recipients. This includes:

• A toll-free information line (888–999–6743) where you can speak with a case manager in the Office of Patient Advocacy
• A donor registry
• A directory of major medical centers providing transplant services
• Information on financial planning for bone marrow transplant