If you or someone you love has primary immunodeficiency disease (PI), also known as PIDD, it's still possible to live a full and active life. Thanks to new therapies and medical advances, people living with PI can go to school, work, socialize, and play sports.
Your immune system keeps you healthy by fighting off germs. But people living with PI have an immune system that is not working correctly.
The World Health Organization currently recognizes more than 300 types of PI. It is estimated that approximately 250,000 individuals (or 1 in 1,200) in the United States have been diagnosed with PI. Although rare, PI is not as uncommon as once believed.
For people living with PI, infections may not go away or can come back often, even with the use of antibiotics. Infections may be common, severe, long-lasting, or hard to cure. Appropriate therapy can prevent complications associated with PI, such as frequent infections, fevers, long-term permanent organ damage, and premature death.
The National Institutes of Health estimates that there are approximately 500,000 Americans with undiagnosed PI.
PI often goes untreated because there are no unique or specific symptoms. Symptoms can:
10 Warning Signs for PI for Adults
If you suspect that you or someone you know has PI, review this list of 10 warning signs of PI from the Jeffrey Modell Foundation. The next step is to get an expert evaluation.View PDF
10 Warning Signs for PI for Children
If you suspect that your child or the child of someone you know has PI, review this list of 10 warning signs of PI from the Jeffrey Modell Foundation. The next step is to get an expert evaluation.View PDF
If you believe you might have PI, the first step is to get an expert evaluation. An immune system specialist, called an immunologist, can help with diagnosis and treatment. When an immunologist evaluates your immune system, the evaluation may include:
A list of resources is provided below. Simply click on the link below to view, download, or print your selected item.
Electronic Personal Health Record
The Immune Deficiency Foundation (IDF) eHealthRecord is a one-of-a-kind electronic personal health record developed for individuals and families living with primary immune deficiency diseases.View/Download PDF
10 Warning Signs of PI for Adults
If you suspect that you or someone you know has PI, review this list of 10 warning signs of PI from the Jeffrey Modell Foundation. The next step is to get an expert evaluation.View/Download PDF
10 Warning Signs of PI for Children
If you suspect that your child or the child of someone you know has PI, review this list of 10 warning signs of PI from the Jeffrey Modell Foundation. The next step is to get an expert evaluation.View/Download PDF
Doctor Discussion Guide
This guide will help you talk to your doctor about your condition, treatment options, and the unique features of Hizentra. Simply print this out and bring to your next doctor’s appointment.View/Download PDF
Hizentra Self-administration Video
Watch the Hizentra self-administration video to learn the step‑by‑step instructions on preparation, proper infusion techniques, and administration.
It's important for the entire family to know about PI. They need to understand that a person with PI can live a normal life with proper treatment.
Family needs to be aware that having PI makes a person more susceptible to getting sick. If they have friends with colds or the flu, they should make it a point not to bring them home.
Family and friends should also know that PI is not contagious and cannot be spread to others. Let them know that having PI does not necessarily limit a person’s activities.
If your child has PI, it's important that other adults that he or she comes in contact with—teachers, school nurses, and administrators—understand the condition and its treatment.
The following tips will help people with PI:
For more information, discussion boards, and support groups for people living with PI or CIDP, visit these websites: