Living with PI

Today, thanks to medical advances, many PI diseases can be successfully treated. With proper therapy most people with PIs are usually able to lead more normal lives because of the reduced risk of infection. Children usually can go to school, play with friends, and take part in sports. Most adults with PI are leading productive lives in their communities. In this section, you'll find specific information about how individuals with PI can thrive and live full lives.

As well as the downloadable resources below, here are a couple of useful links from our NMOs.

 

  • Patient & Family Handbook for Primary Immunodeficiency Diseases 4th Edition - This handbook contains comprehensive information about the diagnosis and treatment of primary immunodeficiency diseases and much more.  
  • Our Immune System - This storybook educates children about primary immunodeficiency diseases through delightful, eye-catching illustrations. The characters explain how the immune system works and describe the treatments for pediatric patients. It is also available in Spanish.
  • Is It Just An Infection Awareness Flyer - Perfect for bulletin boards in physicians’ offices, schools or other public places that will catch the attention of people in the community, this flyer cautions people to be suspicious if they have an infection that is recurrent, persistent, severe, unusual, or if it runs in their family. 
  • THINK ZEBRA! is the awareness program of IDF, the national patient organization in the U.S. for those living with primary immunodeficiency diseases. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras”, and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with primary immunodeficiency diseases are the zebras of the medical world.