Primary Immunodeficiency

What is Primary Immunodeficiency?

Your immune system keeps you healthy by fighting off germs. But people living with primary immunodeficiency disease (PID, sometimes known as PI or PIDD) have an immune system that is not working properly, beginning at birth. For people living with PID, 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, but once correctly diagnosed and treated, people with PID can live full and active lives.

PI Patient Janet Richards

What are the signs of Primary Immunodeficiency?

The National Institutes of Health estimates that there are approximately 500,000 Americans with undiagnosed PID. PID often goes untreated because there are no unique or specific symptoms, but there are common signs.

Learn About the 10 Warning Signs
PI Patient Ben Davies

How is Primary Immunodeficiency diagnosed?

If you believe you might have PID, 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 detailed medical history, a physical exam, blood tests and vaccines to test your immune response.

Learn More About Diagnosis

Here is a sampling of our Vita stories on Primary Immunodeficiency:

To read all of our stories, please visit our Vita Stories page.

Schoolchildren in class
School, Sports and Sleepovers for Kids Who Have PI

Who needs to know about your child’s primary immune deficiency?

Primary immunodeficiencies affect more than 6 million people worldwide
The Facts About Primary Immunodeficiency (PI) Diseases

World PI Week promotes the early testing and diagnosis of primary immunodeficiencies.

IDF zebra mascot
Showing Stripes for Immunodeficiency Patients

Why the zebra symbolizes hope and progress in the rare disease community.

Resources for you

RESOURCE DESCRIPTION
Hizentra Facebook Page Provides PID patients and their families with information on Hizentra, patient stories and support programs. View Website  
Caring for a Child with PID As the parent or caregiver of a child living with PID, you are an important member of his or her healthcare team. You have to be aware of your child's symptoms and responses to treatment in order to effectively communicate with the healthcare team.
View Website 
Tips for Adults and Children Living with PID These tips from the Immune Deficiency Foundation can help make it easier to manage your or your loved one's condition. View Website 
Jeffrey Modell Foundation Answers, expert referrals, patient connections and patient organizations for people living with primary and secondary immunodeficiencies. View Website 
International Patient Organization for Primary Immunodeficiencies Improving awareness, diagnosis and treatment of primary immunodeficiencies worldwide.
View Website 
Immune Deficiency Foundation U.S. national patient organization dedicated to improving the diagnosis, treatment and quality of life of people with primary immunodeficiency diseases.
View Website 
Product Websites Hizentra.co.uk (United Kingdom)
Hizentra.com (United States)
Hizentra.de (Germany)
Privigen.com (United States)
Privigen.de (Germany)

Treatments Available

Privigen® Immune Globulin Intravenous (Human) 10% Liquid Visit Website file
Hizentra® Immune Globulin Subcutaneous (Human) 20% Liquid Visit Website file
Carimune® NF / Sandoglobulin® / Redimune® / Sanglopor® Immune Globulin Intravenous(Human) file
Looking into microscope

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Discover what is involved in participating in one of our clinical trials and how you can enroll.

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