Talking to Your Doctor About Primary Immune Deficiency Diseases

We rely on our immune system to fight harmful bacteria or viruses—either on its own or with the help of antibiotics or antivirals—every day. Most of us recover quickly from infectious illnesses, and our immune system helps protect us from repeat infections in the future.

People with primary immune deficiency diseases (PIDDs), however, have defects in one or more parts of their immune system. They often cannot overcome infections, even with the aid of medicine.

Are you or your child at risk for a PIDD?

  • Do you get multiple, serious infections that are difficult to treat within a year?
  • Have you had bacterial infections that don’t get better, even after you’ve taken antibiotics?
  • When you are sick, do you need to go to the hospital and/or receive intravenous antibiotics to get well?
  • Do you have a family history of primary immune deficiency?

If you answered “yes” to any of these questions, you may be at risk for a PIDD. Consult with your doctor to get tested for an immune deficiency.

What to ask your doctor

  • Based on my medical and family history, am I at risk for an immune deficiency?
  • What tests will be performed to determine my diagnosis, and how long will it take to get the results back?
  • What precautions should I take to reduce my risk of infection?
  • Should I see a specialist?

To diagnose a potential immune deficiency, your doctor will need to take a blood sample and send it to a lab for an initial screening test. If that test shows that you may be at risk for a PIDD, you'll need additional testing.

What to bring to your doctor’s appointment

  • A current list of medicines you have taken in the past and their effects
  • Specific questions you want to have answered
  • A journal to write down answers to your questions or to take notes
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