Amyloidosis Awareness Day in Australia
Amyloidosis Awareness Day is held annually in Australia on 8 May to promote knowledge about amyloidosis, a group of rare diseases characterised by abnormal protein deposits in body tissues. These deposits, known as amyloids, can affect multiple organs and systems.
The day aims to improve recognition of amyloidosis, which is often misdiagnosed due to vague early symptoms such as fatigue, weight loss, and swelling. Diagnosis typically requires a tissue biopsy to confirm the presence of amyloid deposits.
Established in 2016 by Trisha Gardiner-Wilson of the Adam Gardiner Foundation, the observance honours her late husband Adam, who passed away from amyloidosis. The foundation supports research, clinical care, and awareness efforts across Australia.
Date and Significance in Australia
Amyloidosis Awareness Day is observed annually in Australia on 8 May. This national day was established in 2016 by Trisha Gardiner-Wilson of the Adam Gardiner Foundation. The date was chosen by Trisha Gardiner-Wilson to commemorate her late husband, Adam Gardiner, who passed away from amyloidosis on 8 May 2006 at the age of 35. The day is also known as the Australian National Amyloidosis Day and the National Amyloidosis Awareness Day. It is supported and promoted by amyloidosis patient organisations, medical institutions, and other stakeholders across Australia. The Adam Gardiner Foundation, a non-profit organisation, plays a key role in fundraising to support the Westmead Amyloidosis Centre, backing clinical research, and raising awareness about amyloidosis throughout the country.
General Description of Amyloidosis
Amyloidosis is a collective term for a group of diseases characterised by the accumulation of abnormal proteins called amyloids in body tissues. There are several dozen types of amyloidosis, each associated with a specific type of protein. Some forms of amyloidosis are localised, primarily affecting a single organ, while others are systemic, impacting multiple organs and tissues or the entire body. The kidneys and heart are the organs most commonly affected by amyloidosis. Additionally, the condition can involve the nervous system, gastrointestinal tract, endocrine system, musculoskeletal system, eyes, and oral cavity.
Symptoms and Diagnosis
Amyloidosis is frequently misdiagnosed or goes unrecognised due to its early symptoms being vague and nonspecific. Initial signs of the condition often include fatigue, unexplained weight loss, swelling of the legs, shortness of breath, palpitations, dizziness, or fainting episodes that occur after standing or sitting. These symptoms can easily be attributed to other health issues, complicating timely identification of amyloidosis. To confirm a diagnosis, a tissue biopsy is generally required, allowing for definitive detection of amyloid deposits. This diagnostic step is crucial given the nonspecific nature of the early clinical presentation.
Consequences and Prognosis of the Disease
Amyloidosis can have severe consequences depending on the organs affected by amyloid deposits. A high level of amyloid accumulation in the kidneys may lead to end-stage chronic kidney disease, necessitating dialysis treatment. When amyloid deposits occur in the heart, they can cause heart failure, significantly impacting patient health. The prognosis and treatment options for amyloidosis vary according to the specific type of the disease and the organs or organ systems involved. The two most common types of systemic amyloidosis, AA and AL, typically begin between the ages of 55 and 60. However, other forms of amyloidosis can affect younger individuals. Without treatment, the expected survival time for people with systemic amyloidosis ranges from six months to four years, underscoring the seriousness of the condition and the importance of timely medical intervention.
Treatment and Patient Support
Currently, there is no cure for amyloidosis, and no method exists to remove the amyloid deposits that have already formed in the body. Treatment strategies focus primarily on preventing the production of new abnormal proteins in the bone marrow and alleviating specific symptoms associated with the disease. Depending on the type of amyloidosis, therapeutic approaches may include chemotherapy, stem cell transplantation, and various medications tailored to the patient’s condition. The establishment of Amyloidosis Awareness Day serves to increase public understanding of this group of rare diseases, highlighting the importance of ongoing support and research for affected patients.
