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 (PIDs). IDFA business details.
IDFA was formed in 2005 with support from the IDF/KIDS foundation of New Zealand, which was founded in 1987. IDFA has Board representation on the International Patient Organisation for Primary Immunodeficiencies (IPOPI), is aligned with the Immune Deficiency Foundation of New Zealand (IDFNZ) and has the support of the Australasian Society of Clinical Immunology and Allergy (ASCIA).
An Immune Deficiency is a disorder where the immune response (the body’s defence system) is reduced or absent. Primary Immune Deficiencies (PIDs) are caused by defects in the genes that control the immune system, so people with PID are born missing some or all of the parts of the immune system. 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. The World Health Organisation recognizes more than 330 primary immunodeficiency diseases.
There is no cure for the majority of PIDs. PIDs can be mild, severe and in some cases fatal. 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. Even with treatment, the damage cannot be reversed. Many people with PID also have autoimmune conditions such arthritis, lupus and bowel disease.
PIDs include: Common Variable Immune Deficiency CVID, Hypogammaglobulinaemia, Specific Antibody Deficiency SAD, Hereditary Angioedema HAE, Chronic Granulomatous Disease CGD, X-Linked Agammaglobulinaemia XLA, IgA deficiency, Hyper IgM Syndrome, Hyper IgE Syndrome, WHIM and Severe Combined Immune Deficiency SCID.
Treatments include Immunoglobulin replacement therapy (IVIg in hospital, SCIg at home), interferon gamma injections, antibiotics, steroids and in some PIDs, bone marrow transplant.
IDFA is committed to providing education and resources, linking members via teleconferencing and events, and improving patient care and quality of life for those affected by primary immune deficiencies. IDFA offers education and social and emotional support for PID patients and their families. More about PIDs
Secondary Immune Deficiencies are caused by a decrease in antibodies that occur most commonly as a consequence of hematological malignancies, renal or gastrointestinal immunoglobulin loss, chemotherapy, organ transplantation, infectious diseases and corticosteroid, anticonvulsant or immunosuppressive medications, e.g. Rituximab (RTX). IDFA will initially support those patients receiving immunoglobulin replacement therapy. SIs are common in people who have had:
- Chronic Lymphocytic Leukaemia (CLL)
- Multiple Myeloma
- Non-Hodgkin Lymphoma
- Good’s syndrome
- Any Lymphomas or cancers of the lymph nodes or immune system
- Protein losing enteropathy (Gut)
- Lymphoreticular malignancy
- Antibody deficiency due to treatment for Autoimmune Disease using chemotherapy-like reagents (e.g.SLE)
There are similarities and cross over areas when living with an immune deficiency, whether it is primary or secondary. IDFA will be supplying our current resources that are relevant to your situation and age group. It will take some time for us to grow specific resources, however we will keep you informed! More about Secondary Immune Deficiencies.
The Foundation’s primary aims are:
- to educate and raise awareness of primary immune deficiencies within the general and medical communities
- to provide education, resources and emotional support for those with PID, their carers and families
- to improve patient care and quality of life for our members affected by primary immune deficiencies
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