World Primary Immunodeficiency Week

Almost everyone has had a cold, the flu, or sinus and ear infection. Almost everyone has had a cut, graze or abrasion that has become infected. The human body response is usually to rid itself of an infection and work to defend itself against future “bugs” and viruses.

However, people with Primary Immunodeficiencies (PIs) are born missing some or all of the parts of the immune system, leaving them highly susceptible to infection.

PIs are genetic conditions – they are caused by defects in the genes that control the immune system. The main issue is increased susceptibility to infections affecting the sinuses, ears, lungs, bowel and skin. If not diagnosed early, these organs become permanently damaged.

There are more than 300 PIs which affect at least 10 million people worldwide. However, nearly 70 – 90% of PI patients remain undiagnosed. There is also no cure for the majority of PIs – although many can be managed effectively with treatments.

PIDs are not related to AIDS, which is caused by a viral infection (HIV). While not contagious, these diseases are caused by genetic defects and can affect anyone, regardless of age or sex.

Many people with primary immune deficiency diseases experience similar symptoms.

These 10 warning signs are:

  1. Eight or more ear infections within one year
  2. Two or more serious sinus infections within one year
  3. Two or more months on antibiotics with little effect
  4. Two or more pneumonias within one year
  5. Failure of an infant to gain weight or grow normally
  6. Recurrent deep skin or organ abscesses
  7. Persistent thrush in mouth or elsewhere on skin after age one
  8. Need for intravenous antibiotics to clear infections
  9. Two or more deep seated infections such as sepsis, meningitis or cellulitis
  10. Family history of primary immune deficiency

Primary Immune Deficiencies include: Common Variable Immune Deficiency (CVID), Hereditary Angioedema (HAE), Specific Antibody Disease (SAD), Chronic Granulomatous Disease (CGD), X-Linked Agammaglobulinaemia (XLA), Hyper IgM Syndrome and Severe Combined Immune Deficiency (SCID).

The Immune Deficiencies Foundation Australia (IDFA) is a not-for-profit health promotion charity raising awareness and caring for people who have Primary (Genetic) and Secondary (due to chemotherapy and other treatments/ or autoimmune illness) Immune Deficiencies.

IDFA provides education and emotional support for people with PIs and their families. IDFA links the Australian PI community through education, resources, social media, communication and events. For more information, visit www.idfa.org.au

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