November 2007 Newsletter

It has been another busy year for us, with a regular series of inquiries by phone and e-mail.

The year has also been saddened by the death of Mrs Ajita Thuraisingham Lewis in May. Ajita was living in Sydney when her Amyloidosis was diagnosed, but she went to stay with her extended family in Malaysia in her last few months.

Amyloidosis Australia Website

The website is one of the main Amyloidosis web sites in the English speaking world, and a Google search for Amyloidosis in Australia lists us as fifth on the list. A Google search for Amyloidosis on the international web lists us as near the top on the second page. 

Information available

Ellen receives information from several sources, and has a large data base of Amyloidosis medical journal articles, together with books and booklets. We receive news of the latest treatments and methods of diagnosis, and forward those to people who need them, especially doctors, and especially patients who are undergoing treatment for the first time

We also write to overseas Amyloidosis specialists, and run patient’s problems past them. 

We have produced an Amyloidosis CD several times, and the latest version Amyloidosis November 2007 is now available. It is free of charge, and we supply copies to patients and their families, and their doctors.

The November CD has more than 1000 pdf articles, and is an encyclopedia of Amyloidosis. It is the only Amyloidosis CD produced, and copies are sent worldwide. Each version has seen improvements in organization and content. It is quite a challenge even thinking how to organize the information, as there is nothing similar to compare it with, or use for guidance.

Subjects covered include the various types of Amyloidosis, diagnosis and treatment. There are sections on the history of research of Amyloidosis, as well as current research. There are sub sections on various organ systems that Amyloid targets, including cardiac, renal, gastro-intestinal, neurology, etc. Every part of the body is included.

If you would like a free copy of the CD please send your current postal address to This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Ellen is available to help anywhere in Australia or New Zealand, at almost any time, and can accompany a patient and their family to visit a doctor, to help clarify/interpret what the doctors are saying, and what the patient needs to know. Phone 03 9758 2172 in Australia, or 61 3 9758 2172 in New Zealand.

Medical Conferences

In the past we have targeted Haematologists (e.g. at the Myeloma Conference in Sydney in 2005), as they diagnose and treat most Amyloidosis patients. They still need to be kept aware of the latest news, but we felt that we needed to reach doctors who were closer to the daily treatment of patients.

Mayo Clinic Hematology Conference in New Zealand January 2007

Ellen attended a conference in New Zealand in January. The Mayo clinics in the USA hold off-shore conferences for their own staff, and this year theycame ‘down under’ for the first time. A Multiple Myeloma patient from Wellington had been to Mayo for treatment, and his family had organized for the conference to be held in Wellington. Local doctors were invited, and patient support groups were also involved.

Dr. Morie Gertz, one of Mayo’s senior Haematologists, and a world expert on Amyloidosis gave a lecture on Amyloidosis.

Ellen met NZ patients and their families.

Cardiac Conference in Brisbane May 2007

The National Heart Foundation organized a conference for Cardiologists in Queensland in May 2007. The Foundation kindly allowed us to have a 7 page insert about Cardiac Amyloidosis inserted into the satchels for the doctors.

The heading was “You have to think about Amyloid or you’ll miss it.”

“Amyloidosis must be considered in any patient presenting with:

•        Nephrotic range proteinuria

•        Unexplained cardiomyopathy

•        Unexplained hepatomegaly

•        Peripheral and autonomic neuropathy.”

Nephrology Conference in Perth August 2007

We sent a one page ‘satchel insert’ for the 400 delegates at a conference for Renal Nurses in Perth.

We pointed out that:

“In the kidneys it particularly affects the glomeruli. Amyloidosis may also result from long term renal dialysis, and IV drug abuse.” “Therapy may also include dialysis, and organ transplants, including kidney transplants.”

The General Practitioner Conference and Exhibition Melbourne November 2007

Click here

Our aim was to target GPs with the idea “THINK AMYLOID”, when you have a difficult patient. As far as we know this was a ‘world first’ in the work of raising Amyloidosis awareness among GPs.

We used posters under the heading “Amyloidosis Hiding in Plain Sight” made up of pictures from the Mayo Clinic’s brochure for diagnosing Amyloidosis, and the CAP TODAY article on Amyloidosis. (These are on the CD). We also used enlarged slides from a presentation given by Dr Merlini from the Italian Amyloidosis Centre at the Myeloma Conference on the island of Kos in July 2007. http://myeloma.org/pdfs/Kos2007_Merlini.pdf

The pictures showed Macroglossia (enlarged tongue), Racoon Eyes, Amyloid Nails, Jugular Veins like pipes, Hair loss, Bruising, Subcutaneous Amyloid near the eyes, and Shoulder Pad Amyloid.

We found that a two minute “tutorial” with the doctors, nurses and students, and other exhibitors, went down very well. Many said that it was really practical for them.

We had a laptop showing a Powerpoint presentation by Dr. Hugh Goodman from New Zealand, but that was more complex than what these people needed, especially in the short time they had between seminars.

We distributed nearly two hundred copies of the November 2007 Amyloidosis CD, together with a leaflet with the theme “THINK AMYLOID”. There were also printed journal articles about the latest treatments for the various forms of Amyloidosis.

We met several doctors who had patients who had died from Amyloidosis, which was sad, and only one who actually had a live patient.

One lady doctor was amazed when she saw the picture of the nails, as she has a patient who has all the nails on both hands looking like that and she had no idea that it could indicate a systemic disease. She’d tried all the antifungal treatments to no avail.

Another doctor, in his 80’s said that he’d never had an Amyloidosis patient, but when he saw the picture of subcutaneous Amyloid around the eyes he said “I’ve got a patient like that now!”

An exhibitor from a Sleep Apnea booth was amazed when he saw the photos of Macroglossia. He said “We see enlarged tongues all the time and we had no idea that there might be a medical condition other than excess weight behind it!”

We also had a chat with a doctor who is involved in providing the computer prescribing system used by most doctors in Australia. His company has a display stand at the conference. Their software includes the “Prescribing Information” of all the products that are usually prescribed in Australia. When Ellen mentioned that Digoxin, Beta-blockers and Calcium Channel-blockers are all contraindicated in Amyloidosis he was confident that his system would have picked that up .Ellen went back to his stand with him, and he generated a “patient” with the condition Amyloidosis, and prescribed Digoxin for him: no warnings flashed up! So we’ve given him the AL Amyloidosis Guidelines from England (2004) and the article on Cardiac `Amyloidosis (2005) by Dr. Rodney Falk, and he’s going to follow up their references. He said that the drug companies should have included the Warning in their literature, and he suggested that those who are involved with the Amyloidosis world should be pushing the drug companies to do this.

We learnt that quite a few of the doctors have patients who are Vietnam Veterans, so we explained how AL Amyloidosis is being suspected now as a result of exposure to Agent Orange.

We have already made a booking for the GPCE in Sydney in May 2008, and again in Melbourne in November 2008.

http://www.gpce.com.au/melbourne-2008/about-us/

Agent Orange and Amyloidosis

An important link between Agent Orange and AL Amyloidosis is that Agent Orange can cause B-cell problems, and Dr. Ray Comenzo’s article from 2004 on Non-Hodgkin’s Lymphoma is being cited as proof that Amy can be associated this way. The fact that an Australian Vietnam Veteran has already died with AL Amyloidosis is a further proof, as there were only about 50,000 Australians who served in the war. This is higher the normal incidence of 1 in 100,000 population.

*********We can provide further information on the link between Amyloidosis and Agent Orange.

The 4th Asian Pacific Congress of Heart Failure

31st January- 3rd February 2008

Melbourne

http://www.apchf.com.au

We intend having a small display area at this conference to raise Amyloidosis awareness amongst Australian and international Cardiologists. The organizers have kindly heard our request for help, and are giving us an area where we can mount a display similar to the one we had at the GP conference. Normally a 3m x 3m booth would cost nearly $5,000 just for the space, so this is a very generous effort on their part.

Cardiologists are one of our major target areas for raising Amyloid awareness. There was another case in Melbourne this year where a patient had been treated by a Cardiologist for 5 years, and shortly before they died Amyloidosis was diagnosed.

We had invited a world Cardiac Amyloidosis specialist from the USA to come for the conference. We’d even liaised with the organizers to have him deliver a lecture, but he backed out recently, because his mother-in-law is sick. Instead of that he has given us access to his own on-line Powerpoint presentation on Cardiac Amyloidosis, which is available on the web site.

http://www.amyloidosisaustralia.org/Webcasts/Webcasts/

We will be designing a new brochure specifically for the Cardiologists.

Westmead Amyloidosis Clinic

http://agf.server101.com/index.php?/p/index/72

A monthly clinic began operation in September, and we wish them well. Trisha Gardiner worked very hard to raise the funds needed to establish the clinic, and we hope that it will grow in expertise and service to the Amyloidosis community in New South Wales.

Monash Medical Centre – Austin Hospital

Dr Stephen Opat head of the Haematology Unit at Monash Medical Centre is working towards establish an Amyloidosis scan in conjunction with the Austin hospital. Dr. Opat was working at The Alfred and my husband Jim was one of his patients. He now has several Amyloidosis patients, and is hoping to expand the work. We are working with him to raise funding for the scans.

Trip to Western Australia

Jean and I will be visiting Perth to meet patients and doctors next week (3rd to 10th December 2007).

Fund Raising

All our work is voluntary, but we need funds to cover things like the laptop computer, photocopier, exhibition costs, travel, etc.

In August the family of the late Jeff Bray held a memorial function 'A Step Towards a Cure' Fundraising Dinner at the West Adelaide Function centre in Adelaide. Jeff was a SAFL footballer, and the evening was a lot of fun. The proceeds of several thousand dollars were donated to Amyloidosis Australia, and have further extended our work. Jeff’s family has requested that some of the money will be used to produce a new leaflet on Amyloidosis for Australia, and that is nearly complete.

We have also had donations from several families, particularly Ajita’s family, in memoriam for their lost patient.

The main source for our funds is Australian Stock Exchange-Reuters Foundation.

In return for their generosity, the Foundations asks that their beneficiaries provide voluntary helpers for their fund raising events. We are all so scattered, and our numbers so few, that the Foundation understands that we cannot provide as many helpers as other larger, NSW based charities.

The main ASX-RF event is a golf tournament, followed by a dinner with an auction of donated goods and services. Their aim this year is to raise $1.3 million for 29 charities, including Amyloidosis Australia. Next year we hope that our allocation will be increased, to help provide funds for the Amyloid scan.

In February this year Vickie Hooson and her family were helpers at the golf day, in memory of her husband Gordon. Ellen and her children helped at the dinner.

If anyone can spare a few hours we would be very grateful.

The next golf day and dinner will be on 22^nd February 2008, as well as some preliminary days in the weeks leading up to the main event.

Closing date for volunteers is 14^th January, but the earlier you send the form in, the more likely you are to get your 1^st preference activity. Click here for the form .  You can either fax or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it it to us, or fax it straight through to the ASX-Reuters Foundation charity.  Please let us know if you intend to volunteer!