PID Awareness Week 22-29 April
World PI Week 22-29th April
World PI Week is a global campaign which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiency (PI).
The Immunodeficiency Foundation of New Zealand, IDFNZ, marks World PI week by promoting the early warning signs of Primary Immunodeficiency.
Primary Immunodeficiency (PID) is a growing category of 250 different disorders resulting from some form of deficiency of the immune system. Primary Immunodeficiency can, if not treated, be chronic, serious and even fatal.
Many PID disorders are considered ‘rare diseases’ which has meant that diagnosis and treatment have historically been difficult, but thanks to research and medical progress over the last 60 years, many of these conditions are now treatable. Yet because symptoms are similar to common and recurrent infections, PID often remain undiagnosed, misdiagnosed, or is diagnosed at a late stage.
Once a diagnosis is established, much can be done for PID patients. At a minimum, the recurring infections can be treated with low or moderate doses of appropriate antibiotics. These can help prevent permanent damage to the lungs and bronchial tubes, thus promoting the patient's long-term survival while improving the quality of life. When appropriate, immunoglobulin therapy is the accepted protocol for a wide range of PID diseases. Advanced treatments such as the interleukins, PEG-ADA, and gamma interferon can help in some complex cases. Bone marrow transplantation and gene therapy may be the appropriate protocol in specific disorders
Thanks to new therapies, greater public awareness, and better access to information, many patients with PI are leading more normal lives - going to school, camp, work, playing sports, and enjoying a better quality of life. There has never been more hope for people who are immunodeficient.
It has been estimated that 70% of PID patients are un-diagnosed world wide.
New Zealand is introducing new born testing for SCID in 2017 – this is a major step forward for diagnosing this fatal PID condition and will surely save precious lives.
Other PID conditions however remain challenging for clinicians to diagnose – the early warning signs are important.
Greater awareness is the key to ensure more PID patients can be diagnosed, treated and lead productive lives.
Help IDFNZ spread this important message - follow our facebook campaign and add your voice.