People across the globe are commemorating the 10th anniversary of World PI Week (WPIW), a time to raise awareness and educate people about the primary immunodeficiency (PI) patient experience – from diagnosis through treatment.
With this year’s theme of “celebration,” we honor a decade of accomplishments in research, treatment, care, screening and diagnosis – all of which help improve the lives of people with PI. We also celebrate the many partnerships among patients, scientists, health care professionals, policymakers and advocacy organizations that are driving innovation forward for the six million people worldwide who live with PI.
Let’s join together during WPIW to spread the word about PI to improve early diagnosis and access to treatment. In observance of this 10th anniversary, below are 10 facts to share with family and friends on social media using #WorldPIWeek or @WorldPIWeek.
- PI is not a single disease. It is a group of more than 400 rare, chronic disorders in which part of the body's immune system is missing or malfunctioning.
- There are many more than six million people with PI worldwide. Seventy to 90% of people who have PI are still undiagnosed; early diagnosis contributes greatly to improved quality of life and care for people with PI.
- People living with PI have frequent infections. Patients with PI commonly also have recurring infections, infections that won't go away or unusually severe infections. As a result, patients may face repeated rounds of antibiotics or be hospitalized for treatment.
- A number of signs and symptoms can point to a diagnosis of PI. The most common are severe, persistent and/or recurring ear, sinus or skin infections, as well as inflammation in the lungs, liver and intestines.
- The first step in diagnosing a primary immunodeficiency is usually blood testing. Doctors can further evaluate the patient’s immune system through additional tests, a physical exam and a review of medical and family histories.
- Genetics play a role. People who have a family history of primary immunodeficiency disorders have a higher-than-normal risk for developing PIs.
- For severe forms of primary immunodeficiency, newborn screening is a cost-effective way to drive early diagnosis and save lives. Routine newborn screening programs for severe primary immunodeficiency (e.g., SCID and XLA) should be widely implemented in public healthcare settings in all countries.
- Immunoglobulin therapies are essential, life-long treatments for the majority of people with primary immunodeficiency. Immunoglobulin therapies are included in the World Health Organization (WHO) Lists of Essential Medicines.
- People who have PI rely on the generosity and commitment of plasma and blood donors. People who donate plasma help ensure that immunoglobulins and other plasma-derived medicinal products are available to those who need them.
- Thanks to new therapies, greater public awareness and better access to information, many patients lead active, productive lives. They’re able to go to school and work, play sports and enjoy social activities.
To learn more about WPIW, please visit www.worldpiweek.org.