Lupus speech for Younger set, Thursday, May 4, 2006

I doubt if anyone here tonight knows much about Lupus.

And most young people, quite understandably, don’t give it a second thought. When you’re young you don’t believe things like heart attacks, cancer and the host of diseases and debilities we are hearing about constantly, will ever happen to you.

And if you’re lucky and take good care of yourselves, they probably won’t.

So why worry about Lupus?

It’s partly a case of “know thine enemy”.

With heart disease, knowing about it, understanding its symptoms---and of course understanding some of its causes--has led to big improvements in Australia.

Particularly knowing some of the causes enables us to avoid them---to eat a better diet and get more exercise.

Lowering the incidence of heart disease has been a big success story in recent years. And the main factor has been public awareness….”Know thine enemy.”

One of the main aims of the Lupus Association of Tasmania is to increase public awareness of Lupus.

As the Association points it:

“We aim to create much greater interest and knowledge in the problems associated with the disease, which will then hopefully lead to earlier diagnosis and treatment by medical and health professionals, and consequently a better quality of life for the sufferers.

“We hope to help Tasmanian sufferers and their families become more aware of their disease and therefore help them to be in a better position to manage their illness.

“The Tasmanian community will thereby benefit from an improved standard of treatment and health care and hopefully a reduction in the morbidity rate will result.”

That’s it in a nutshell.

But let’s get back to the question:

“Exactly what is Lupus?”

Put simply, it’s a disease of the immune system in which some of the cells that are supposed to attack invading infections turn on friendly cells instead.

The immune system normally protects us by producing antibodies, or proteins, that attach to and destroy foreign invaders like bacteria and viruses.

In people with Lupus, the immune system produces antibodies that target the body’s own healthy cells. This can lead to tissue damage and organ failure, disability and even death.

Who can get Lupus?

Just about anybody of any age, but it mainly affects women between 15 and 44 years.

Lupus is difficult to diagnose because its symptoms mimic other illnesses. That’s why a public awareness campaign is vital.

Many doctors worldwide are unaware of the symptoms and health effects of Lupus, causing people with the disease to suffer several years before they are able to obtain a correct diagnosis and treatment.

There is a deep unmet need worldwide to educate and support individuals and families affected by Lupus and an urgent need to increase awareness of the symptoms and health consequences of Lupus.

If anybody has any of the following symptoms they should consider seeing their doctor for advice:

Painful or swollen joints for longer than three months

An unexplained fever of more than 38 degrees for more than a few days

Persistent, extreme exhaustion for extended periods, even after restful sleep

Sensitivity to the sun

Low blood counts---low haemoglobin, low white cells or low platelets.

Protein in urine

Chest pain with deep breathing for more than two days

A prominent redness or colour change on your face---like a butterfly across your nose and cheeks

A fit or seizure

Sores in your mouth than have lasted longer than two weeks.

I think you can begin to see why public awareness of Lupus is so important, and why the Lupus Association in Tasmania needs all the help it can get to spread its message.

Now, as you all know, we’re constantly bombarded with requests for help from a myriad of associations and organizations---dogs for the blind, cancer research, heart disease, epilepsy, life saving---you name it and your likely to get a telephone call to buy a raffle book or make a donation.

Most people have to narrow it all down---they pick one or two charities they find worthy, but have to politely reject the rest.

You can’t help them all.

But I would argue that even by being aware you are of some help.

The more people who know about Lupus the better society can cope with it. And that public awareness, as I’ve said, is the main aim of the Lupus Association.

The good news is that it doesn’t COST a great deal to spread awareness---although funding obviously helps a lot.

But the more people there are in our society who know about illnesses, their symptoms and their causes, the better we are able to fight those illnesses.

There is no greater social illness than ignorance.

But of course what is needed, as well as public awareness, is a cure.

At this stage Lupus is incurable.

Medical research on Lupus and efforts to develop safer and more effective therapies for the disease are under-funded in comparison to other diseases of comparable size and severity.

No new safe and effective treatments for Lupus have been introduced in more than thirty years.

Current treatments for Lupus are very toxic and can cause other life-threatening health problems.

Fortunately, increasingly efforts to identify a cure for Lupus are increasingly being coordinated at an international level.

Multiple Lupus clinics around the world are collaborating on studies and clinical trials of potential new therapies.

World Lupus Day, next Wednesday, May the tenth, will focus on the need for more research on Lupus.

By being aware of World Lupus Day you are offering Lupus patients the comfort of knowing their condition is recognized and is being addressed on a global level.

And of course by being more aware of Lupus, your are better able to recognize it happening to you or those around you.