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Carer Tips

• Some handy hints and help for long-suffering carers!

Journal articles on Amyloidosis on www.amyloidosis.org.

Free Journal articles on Amyloidosis, mainly for Medical Practioners.

• We have access to many other journal articles, so if you email us we can send you articles on your specific problems, eg. Amyloid in the gut, laryngeal, secondary to Rheumatoid Arthritis, caused by NHL, with Rituximab etc etc

Support Sources

• Charities and Associations in Australia/NZ which provide help, some with accommodation, financial, counselling, advice etc etc.

Supportive Therapies

• This page has quotes and links to articles with useful information about ways to alleviate specific medical problems for Amyloidosis patients.

Free Light Chains

• If you have Primary (AL) Amyloidosis it is important to have your Light Chains tested regularly, to determine the status of your disease, even if it is sometime since you were diagnosed.  If testing is unavailable in your state, you can have your blood sample sent to the Alfred Hospital, in Melbourne.  We know they currently test some interstate samples, on a weekly basis.  The testing request needs to originate from your doctor, and the results will be sent back to the doctor which requested it.  We understand that FLC tests are also now available at the Haematology Dept. Sir Charles Gardiner Hospital in Nedlands, Western Australia.
• More information on Free Light Chains is available from the manufacturer's website (The Binding Site).  They also have an interesting 'Add-In' for Microsoft Excel - read the instructions first! Click here!
• Details on the Alfred Hospital's pathology services are available at http://www.alfred.org.au/departments/pathologyˍservice.html
• This excerpt is taken from the Alfred Hospital (Melbourne) Pathology Handbook

1. LIGHT CHAINS (of monoclonal immunoglobulins): blood and urine. Acronym/Synonym: "Bence-Jones" Protein
2. Light Chain Detection: The presence of free and intactmonoclonal light chains is assessed by immunofixation afterelectrophoresis or isoelectric focusing.
3. Light Chain Typing: The heavy and light chain classes aredetermined when a new monoclonal protein (paraprotein) hasbeen detected in a previously undiagnosed patient. Consultwith the Protein Section regarding possible further studies.

• Enquiries: Clinical Biochemistry Protein Section, (03) 9276 3141. Serum (not plasma), plus a 24 hour urine collection(preferable) or a 50 mL random urine specimen.
• http://bayside.etsolutions.com.au/uploads/departmentfiles/87ˍPathˍHandbookˍ2002ˍWeb.pdf

If you are interested in journal articles on Free Light Chains or other diagnostic tools for Amyloidosis, please contact Ellen, at This e-mail address is being protected from spambots. You need JavaScript enabled to view it