Primary Immunodeficiency Awareness Month 2023

Primary Immunodeficiency Awareness Month is a US national event held throughout April. This event is supported by The Immune Deficiency Foundation (IDF) (www.primaryimmune.org)

Primary immunodeficiencies are genetic defects of the immune system in which part of an individual's immune system is compromised and not functioning properly. There are about 200 different forms of this disease. This disease is not contagious and both adults and children can be affected by this condition.

Patients with Primary Immunodeficiencies are susceptible to a wide range of infections. The severity of an infection can vary from moderate to severe. Infections which are more complicated in nature, tend to be longer lasting and reoccurring. Reoccurring infections can be disruptive to a persons life bringing difficulties such as maintaining a consistent work or school schedule and subsequent financial and social hardship.

Infections associated with primary immunodeficiencies can affect many areas of the body including the:

• lungs
• sinuses
• urinary tract
• intestinal tracts
• throat
• ears
• brain
• spinal cord

Individuals with Primary Immunodeficiencies endure recurrent health problems and can develop serious and debilitating illnesses. Early diagnosis is KEY!

The Primary Immunodeficiency Community identifies with the medical notion of looking for 'zebras' when diagnosing a patient. According to IDF this is based on the opposite of medical school teaching practices in which many doctors are taught to focus on the likeliest possibilities when making a diagnosis.

They are taught the saying "when you hear hoof beats think horses not zebras". In the case of rarer conditions sometimes doctors need to look for a zebra, the less obvious choice. Patients with Primary Immunodeficiencies are the zebras of the medical world and that's why IDF says Think Zebra!

Immune Deficiency Foundation (IDF) recommends that you ask your doctor to check for the possibility of PI if you have an infection which is:

• Severe- requires hospitalization or intravenous antibiotics
• Persistent- won't completely clear up or clears up very slowly
• Unusual - caused by an uncommon organism
• Recurrent - Keeps coming back
• Runs In the Family - others in your family have a similar susceptibility to infection

The month of April is used to spread awareness of this condition and raise money to support associated charities mostly through various fund raisers which individuals put together throughout the country. Both children and adults may be involved in these awareness and fundraising events.

World Primary Immune Deficiency Week occurs during this month within the last week in April. This is an International Event also supported by Immune Deficiency Foundation alongside other national and international organizations (see www.worldpiweek.org).