Amyloidosis Centre

 

Welcome to the PA Hospital Amyloidosis Centre

The Princess Alexandra Hospital Amyloidosis Centre aims to improve the diagnosis and treatment of all patients with amyloidosis. This is being done through a program of co-ordinated clinical care, patient education and support, training of doctors and research into better diagnostic and monitoring tools, as well as clinical trials of new treatments.

PA Hospital Amyloidosis Clinic

The PA Hospital Clinic was established in 2009. This clinic offers services to patients with all types of Amyloidosis.

The services offered include:

  • Diagnosis of amyloidosis
  • Amyloidosis typing
  • Assessment of organ and tissue damage
  • Treatment advice
  • Treatment care
  • Referral for genetic testing
  • Information about available treatment trials
  • Support and education.

The clinic is staffed by a team of health professionals which includes haematologists, cardiologists, renal physicians, pathologists, specialised nurses, social workers and a support and education officer. Other specialist services from the PA Hospital are available depending on individual need.

You may see one or more or all of these specialist doctors depending on the type of Amyloidosis you have and which organs are involved.

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What Is Amyloidosis


Amyloidosis is a term for a group of devastating, complicated and rare disorders. Amyloidosis is caused by the abnormal folding, aggregation and accumulation of abnormal protein fibrils in organs and tissues of the body. These abnormal protein deposits (=amyloid) disrupt normal body function and, without treatment, will eventually lead to death. There are more than 20 different types of amyloidosis. It is not a cancer but is equally serious and in most cases is incurable at this time.

The main types of Amyloidosis are:

  • AL Amyloidosis (immunoglobulin light chain amyloidosis) - This systemic disease is usually caused by a bone marrow disorder
  • AA Amyloidosis - This type of Amyloidosis is caused by deposition of the serum amyloid A protein (SAA) when SAA is elevated over many years due to long-term inflammatory disease or infection.
  • Hereditary/Familial Amyloidosis - There are a number of types of hereditary Amyloidosis, caused by an inherited gene mutation which leads to a lifelong production of the abnormal protein amyloid. The most common types of hereditary Amyloidosis are ATTRmut(transthryretin gene mutation) and AFib (fibrinogen alpha chain gene mutation).
  • Senile Cardiac Amyloidosis (recently renamed ATTRwt or wild type transthryetin amyloidosis). This type of Amyloidosis occurs when transthretin amyloid deposits in the heart. As opposed to ATTRmut, his type of Amyloidosis is NOT an inherited disease.
  • Localised Amyloidosis - In this type of Amyloidosis the amyloid protein is both produced and deposited in a single organ.

Diagnosis

The diagnosis of amyloidosis is difficult. Because the symptoms of amyloidosis mimic other diseases it is often not diagnosed early. The presence of amyloidosis is confirmed by a tissue biopsy but then further tests are carried out to establish which of the many different types of amyloidosis a person has and to what degree any organs and tissues are involved. The PA Hospital Amyloidosis Centre offers high level amyloid diagnostic and typing services not available elsewhere in Australia.

Sometimes this typing is difficult and the results may take some weeks before they are known. However it is essential that your type of Amyloidosis is correctly typed, as treatment is different for the different types of Amyloidosis.

Support

Support and education

When you first attend the clinic you will receive the booklet Understanding Amyloidosis published by the Leukaemia Foundation. Reading the whole of this book will give you a general idea about all the types of Amyloidosis. However many people prefer to look at the index and read the general section on Amyloidosis and then turn to the relevant pages about their own disease.

Once the type of Amyloidosis you have has been made you will be offered further information and encouraged to ask all your questions so that you can learn about your treatment and how to live with Amyloidosis.

Support meetings

Individual support will be offered at the clinic by the medical staff, specialised nurses, the social workers and the support and education officer. Contact numbers for some of these staff is attached to this sheet. The Leukaemia Foundation conducts regular education and support groups in the capital cities. Contact 1800 620 420 FREE for information about these meetings.

In Queensland, the Leukaemia Foundation's coordinator of Amyloidosis services Sheila Deuchars can be contacted on 07 32522277 FREE or e-mail address sdeuchars@leukaemia.org.au

A quarterly newsletter is also produced in Queensland and distributed widely.

The Leukaemia Foundation also conducts regular amyloidosis telephone forums. These forums are arranged and hosted by the national coordinator for the Leukaemia Foundation Kaye Hose who can be contacted on 03 9863 6951 FREE or e-mailed on myeloma@leukaemia.org.au


More Information

Newsletters

The Leukaemia Foundation produce a three monthly publication the Amyloidosis News. Ring 1800 620 6951 FREE to be placed on the data base to receive this.

The National Amyloidosis Centre in London publish on line a quarterly new letter containing medical information and patient stories. This web site also contains a great deal of useful information. To explore this site go to www.ucl.ac.uk/amyloidosis/nac

Other useful websites

UK National Amyloidosis Centre
www.ucl.ac.uk/amyloidosis/nac
Amyloidosis Support Groups (US)
www.amyloidosis.org
Amyloidosis Foundation (US)
www.amyloidosis.org/
Boston Amyloidosis Centre
www.bu.edu/amyloid/
Mayo Clinic Amyloidosis Centre
www.mayoclinic.org/diseases-conditions/amyloidosis/
Kidney Health Australia
www.kidney.org.au/
The Heart Foundation
www.heartfoundation.org.au/
Myeloma Australia
www.myeloma.org.au/
Myeloma UK
www.myeloma.org.uk/