Media Releases

MEDIA RELEASE

World PI week advocates testing, early diagnosis and optimal treatment for people with primary immune deficiency diseases. Primary immune deficiency diseases affect more than six million people worldwide, with no gender, age or geographical boundaries.

Christine Jeffery, Executive Officer of the Immune Deficiencies Foundation Australia (IDFA) comments: “Raising awareness is essential. Primary Immune Deficiencies (PIDs) are rare and chronic diseases that affect patients and their families. Early diagnosis will enable people with a Primary Immune Deficiency to access life-saving and life-enhancing treatments and improve their quality of life.”

 

7 Warning signs:

  1. An unusually large number of infections requiring treatment
  2. Infections caused by unusual types of organisms
  3. Infections in unusual places
  4. Infections that do not respond to treatment as normally expected
  5. A child that does not grow or put on weight as expected
  6. A family history of immune deficiency or abnormal infections
  7. Any other unusual symptoms related to infections

Diagnosis: A Primary Immune Deficiency is diagnosed by an Immunologist.

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

Treatments include:

  • 2-4 weekly infusions of IVIg (intravenous immunoglobulin) or SCIg (subcutaneous immunoglobulin)
  • Gamma Interferon, Injections, Antibiotics, Steroids
  • in some PIDs, Haemopoietic Stem Cell Transplantation (bone marrow transplant)

Prognosis: There is no cure for the majority of PIDs. PIDs can be mild, severe and in some cases fatal. Early detection and correct treatment of PID can:

  • Reduce the number and severity of infections
  • Reduce the impact of on major organs
  • Help many children and adults with PID have a better quality of life

Raising awareness: IDFA is the peak patient body for Primary Immune Deficiencies in Australia. Membership is free to those affected by PID. Join online at www.idfa.org.au

Services: IDFA provides education and emotional support for people with PID and their families. IDFA links the Australian PID community through social media, conferences and events. Request a resource pack.

Events: In support of world PI Week IDFA hosts the “Touch of Elegance” Gala Ball at the Lakeside Banquet and Convention Centre Taylors Lakes Victoria to support those affected by Primary Immune Deficiency Diseases. IDFA 2015 “Touch of Elegance” Gala Ball.

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