22nd-29th April is World Primary Immunodeficiency Week raising awareness amongst the general public of primary immunodeficiencies.
Primary immunodeficiencies are disorders in which part of the body’s immune system is missing or does not function properly. When a defect in the immune system is inherited (carried through the genes), it is called primary, or inherited, immune deficiency. There are over 200 forms of Primary Immunodeficiency (PI), ranging widely in severity. PI often presents itself in the form of “ordinary” infections.
Physicians sometimes treat the infections while missing the underlying cause, allowing the illnesses to recur, and leaving the patient vulnerable to vital organ damage, physical disability, and even death.
I was lucky in that mum knew something was wrong with me and pushed for me to see a specialist which led to my diagnosis.
The Objectives of World PI Week are:
- To drive recognition of primary immunodeficiencies (PI) as an increasingly important group of diseases
- To increase recognition of PI amongst the medical profession as well as parents, school teachers, day care centre employees, researchers and nurses to increase the understanding of these diseases and promote early diagnosis
- To encourage health authorities to use existing awareness materials produced by JMF, IPOPI, PID UK and other stakeholders to promote the timely diagnosis and treatment of people living with PI
- To promote the model of combining physician education and global awareness with the infrastructure to diagnose and treat PI worldwide
- To stimulate efforts to improve the recognition, diagnosis, treatment and quality of life of people with PI world-wide
How Rare? 