About The Lymphoedema Association of Australia

Judith R. Casley-Smith

The Lymphoedema Association of Australia (L.A.A.) was formed in 1982 to aid research into lymphoedema (lymphedema) and to help patients. Part of this function is to educate patients, therapists and doctors, and to disseminate information in general.

At that time, many with lymphoedema were undiagnosed. Sometimes they were told that they were just 'too fat'; those who were diagnosed were usually told that 'nothing could be done'; a few were offered surgery (often reduction operations which often made the condition worse, or lympho-venous shunts which often became blocked after a year or so). The benzo-pyrones were unknown in this country (and in most others). 'Paroven' (Zyma) was available, but its effectiveness for lymphoedema had not yet been demonstrated; coumarin (Lodema) was quite unobtainable (except in a few European countries), nor had double-blind trials been performed. Complex Physical Therapy (C.P.T.) was available only in a few German clinics; its mode of action was not nearly as well understood as now.

In 15 years all this has changed, at least for those who are well-informed, and awareness of the changes is growing dramatically. In Australia, this alteration has been due to the efforts of the L.A.A. and a band of enthusiastic colleagues and helpers. Even in other countries the influence of the L.A.A. has been considerable, in: New Zealand, the U.S.A., India, China, Argentina, Switzerland, France, Spain, Italy, the U.K., the Netherlands, Sweden, and South Africa. This refers to improvements in C.P.T., in teaching, in the setting up of clinics and in the use of the benzo-pyrones. The influence of the L.A.A. has been literally world-wide in the understanding of the mode of action and effects of the benzo-pyrones on lymphoedema and elephantiasis, and of some of the effects of C.P.T. The L.A.A. receives requests from most countries in the world for advice, videos and books (about 100 a week at present).

Of course, while it is pleasant that an Australian institution is acknowledged world-wide, people in Australia are perhaps more interested in: 'what has it done for us?'. This may perhaps be best answered by saying that more patients in Australia have a wider range of treatment more readily available than anywhere else in the world! This is a sweeping statement, but a true one. It is due to the efforts of the L.A.A. and to the many enthusiastic and hard-working therapists, doctors and patients who have helped it.

The benzo-pyrones are of course of special interest to us since we have been working on them since 1967. While they have been used in Europe for over 30 years, it was in Australia that their mode of action was first demonstrated (by Dr. N. Piller and ourselves, in collaboration with many colleagues in many countries - notably Drs. M. & E. Földi and L. Clodius). It was in Australia that the first double-blind trials showed that both Paroven and coumarin (Trade Name, Lodema) reduced lymphoedema; and it was from here that the successful World Health Organization trials of coumarin in elephantiasis were conducted in India and China.

The very useful topical benzo-pyrone (Lodema ointment or powder) was developed and tested here, and is now generally available here and in some other countries. Lodema tablets and ointment are now available from pharmacies (upon prescription).

In association with the University of Adelaide and the L.A.A., we conduct two-week teaching courses for therapists in Complex Physical Therapy (C.P.T. / C.L.T.). There are about three such courses per year. So far we have trained about 200 therapists (including some 40 from the USA and 7 from New Zealand). This is not nearly the number which have been trained by the Földi's in Germany, but they were the first such courses in English.

The L.A.A. published the first detailed results for C.P.T. which confirmed those of the Földi's, giving more detailed statistics. It was responsible for the first trials of C.P.T. combined with other therapies. Now many clinics are using C.P.T. in most Australian cities, and the L.A.A. has helped to advise others in New Zealand, U.S.A., Argentina and Singapore. The L.A.A. continues to monitor their results and give advice, when requested.

C.P.T. is vitally dependent on good compression bandages and garments . Ten years ago those suitable for treating lymphoedema did not exist in Australia (or most other countries). The efforts and reputation of the L.A.A. (and often personal lobbying at international medical/scientific meetings) has resulted in many brands being imported into Australia (and other countries). The products that are available are evaluated to the best of our ability, with a very considerable input from therapists and patients, and passed on to all members - as are skin care products, of which there is a very good range available here and overseas.

Regarding awareness of lymphoedema, the L.A.A. has run symposia, and hosted the Xth. International Congress of Lymphology (Adelaide, 1985) in association with The University of Adelaide. At this, it ran the first ever (in the entire world) session for patients with lymphoedema. This has since been followed at other Congresses and at meetings of the various support groups - in Australia, the U.S.A. and other countries.

The L.A.A. has conducted intensive media campaigns. In this, it has been strongly supported by the various Australian State support groups.

These organisations, which now exist in almost every State, grew out of the L.A.A. and are affiliated with it. They play vital roles in maintaining patients' morale, explaining the nature of the disease and its treatment, helping patients to get appropriate treatment, and improving funding from State governments and health funds. It should be noted, however, that State groups are not all equipped to provide medical advice on lymphoedema diagnosis and treatment in its many forms and complications, but they can at least tell patients were to go for help. All members are most strongly urged both to join their State support group) and also to continue to be members of the L.A.A.

The problem of the cost of treatment is a very real one, which has concerned us for a long time. It was vital to establish that the various treatments worked, and worked well, before it was possible to ask for support from governments or health funds. Trials take a long time, but were essential. Even C.P.T. in Australia (although well known in some European countries) had to start in a small way, so that the methods and results could be carefully evaluated; rushing in with half-trained, unsupervised therapists would only have produced bad results and meant that the treatment was unprofessional. Now we have the results and statistics that we and the State organizations can use.

However we deeply regretted that, effectively, only the relatively wealthy could benefit. There was simply no way that C.P.T. could easily be used in public hospitals since it was vital that each individual had their own therapist for at least an hour a day, for five or six days a week. Now the method has been shown to be so successful, some hospitals have been willing to re-organise their staff. Hopefully, more may soon follow.

We should point out that neither the L.A.A., nor any of its office-bearers, has any financial interest in any clinic whatsoever. Royalties from Lodema tablets, etc. are passed to the L.A.A. Profits from the books, videos, etc. go to the L.A.A. (copyright has already been donated to it). Members' subscriptions just cover printing and distributing the Newsletter and the booklet: 'Information about Lymphoedema for patients'.

The L.A.A. needs members. If you wish to remain informed about further treatment, or treatment in different states which may become available, would you please join ? The fact of your being a member will help us to maintain our status as a charity and so, hopefully, get donations. It will also help us to put more pressure on health funds (government and private). You get at least one yearly newsletter and advice if needed.

Your State support group also needs your support, for the same reasons, plus there are meetings which can give you much support and information.

If you wish further information, by all means write to us. We are sometimes away, but someone always handles our letters; please write or fax - (08) 271 8776 in Australia, 61+8 271 8776 outside of Australia, or email (after mid-October).

Of course if the matter is urgent, or if the interaction of conversation is obviously essential, then by all means telephone; but a letter does give us time to think things over before answering. Mail is often slow, please allow at least 2-3 weeks between your letter and an answer arriving!