Who is the best doctor for my diagnosis?

To make sure you get the best care and treatment, it is important to find a doctor with expertise in treating your specific disease. Specialists in bone marrow failure diseases such as aplastic anemia, MDS, and PNH are hematologists (doctors specializing in blood diseases) and oncologists (doctors specializing in cancer). To find an expert, you might want to call the hematology/oncology department at a teaching hospital affiliated with a local university to get the name of a doctor with expertise in your disease. The doctors at teaching hospitals are most familiar with rare diseases. They work in a research and teaching setting and are up-to-date on both the standard therapies and new investigational treatments.

Though AA&MDSIF does not refer specialists, patients and families can contact the AA&MDSIF patient educator, at (800) 747-2820 or clark@aamds.org for more information on finding a doctor and getting second opinions.

When contacting a specialist, you might ask the following questions:

• Does the specialist accept your health insurance?
• Is the doctor an expert in treating your suspected or diagnosed disease?
• Is the physician's hospital or treatment center accredited and experienced in the treatment of bone marrow failure diseases?
• Is the physician able to discuss all standard treatment options for your disease, including clinical trial options?
• Are you comfortable with the style and level of communication with the physician and other members of the health care team?
• How often will you need to visit the physician, and is transportation and housing an issue?