World Primary Immunodeficiency Week calls for patient-centred care
Early testing and diagnosis of primary immunodeficiency increases treatment success
CHILDREN and adults who fall ill with recurrent, unusual, or more severe infections, may suffer from an undiagnosed underlying primary immunodeficiency (PI) disease. This is according to Professor André van Niekerk, Paediatric Pulmonologist and Chairman of the Allergy Society of South Africa, who says that these conditions often go under diagnosed and under reported.
World PI Week from 22 to 29 April is a global movement to raise awareness of primary immunodeficiency and related challenges.
It also promotes quality of life for people with primary immunodeficiency, early diagnosis, availability and access to treatment and care worldwide, as well as stimulating communication and advocacy.
The Allergy Foundation of South Africa (AFSA), The Allergy Society of South Africa (ALLSA) and the Primary Immunodeficiency Network of South Africa (PINSA) supports these awareness efforts alongside several international organisations.
Primary immunodeficiencies are rare diseases which occur when a person’s immune system is absent or does not function properly.
When a defect in the immune system is inherited (carried through the genes), it is called primary immunodeficiency.
Affecting six million people worldwide, there are more than 320 forms of Primary Immunodeficiency (PI or PID), ranging widely in severity.
It often presents in the form of ‘common’ infections, sometimes leading physicians to treat the infections while missing the underlying cause, allowing the infections to reoccur, and leaving the patient vulnerable to vital organ damage, physical disability and even death.
The types are all different, meaning that each individual requires a personalised approach, focused on his or her specific needs.
World PI Week is an opportunity to join a global movement calling for patient-centred care for people living with primary immunodeficiency and their families around the world.
Patient centricity means not working around, but with patients. Patients and their families are partners of healthcare providers in the decisions related to their own care and treatment plans.
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