PI Awareness 2021

Do you know someone affected by Primary Immune Deficiency?

Primary Immunodeficiencies (PIDs) are a diverse group of more than 400 potentially serious, chronic illnesses due to inherited absence or dysregulation of parts of the immune system. Symptoms often appear in childhood, but many can first occur in adult life. PIDs can lead to reduced quality of life and life expectancy due to recurrent, chronic, or severe infections, swellings, autoimmune and inflammatory problems and are a significant health burden. 

Individual PIDs are rare, including many with only a few patients identified in the world, whilst the more common PIDs affect between 1 in 10,000 and 1 in 1,000,000 people. However, taken together, the prevalence of PIDs is overall estimated to be 1 in 1,000 people.

There are six main types of PIDs that affect the immune system in different ways:

• Predominantly antibody deficiencies e.g. common variable immunodeficiency (CVID)
• Combined immunodeficiencies e.g. severe combined immunodeficiency (SCID)
• Phagocytic cell deficiencies e.g. chronic granulomatous disease (CGD)
• Immune dysregulation e.g. autoimmune lymphoproliferative syndrome (ALPS)
• Autoinflammatory disorders e.g. familial Mediterranean fever (FMF)
• Complement deficiencies e.g. hereditary angioedema (HAE)

Living with a chronic health condition such as PID can be tough. It  can take time to achieve a diagnosis , and to access the appropriate expertise and  management of a patients health. Life with a rare medical disorder can be lonely and stressful .

IDFNZ was formed in 1989 to support PID patients across New Zealand . 

Our Vision:

A New Zealand where people with rare Primary immune deficiencies (PID) and secondary immune dysfunction, are assured of early diagnosis, fair treatment, optimised health outcomes and improved wellbeing.

IDFNZ offers hope with free membership, access to patient friendly medical information, hospital  and medical expense assistance, and the opportunity to connect with others facing a similar journey. You do not have to battle alone - contact IDFNZ today. info@idfnz.org.nz 

 

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I 've heard it in the chilliest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

-Emily Dickinson

Hope.