Finding help when you have a liver disease

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By Tania Phillips

We all know about the Heart Foundation and Cancer Council but you’ve probably never heard of the Liver Foundation and that’s something that it’s CEO Sally Castle is hoping to change.

For many of us, the Liver is just another organ until suddenly a doctor tells us -it’s fatty – followed by “just lose some weight and you’ll be fine” from some doctors and no further discussion.

However, Sally says liver problems are “the biggest health issue no ones heard of” and so the Foundation is out to be there to give patients, support, tips and more information about what they have, what they are facing and what they can do.

“The Liver Foundation is Australia’s peak body for Liver Disease,” she said.

“We cover all of the Liver Diseases – there are over a hundred and really advocate for patients and are the patients voice. We support patients, we advocate to the government to put Liver Disease on the agenda and we support and fund research. We provide GP and Nurse education so that they can support people with Liver Disease with up-to-date information. We do a lot of work supporting and informing patients.”

If you’ve just been diagnosed with fatty liver or one of the other 100 liver diseases, you are often left wondering what to do next.

“We do know that people, when they get a diagnosis it can be a really confronting and confusing and worrying time,” Sally said.

“The first thing – we’ve got a fantastic website Liver.org.au, that’s set up so people can come and find out a bit more about their disease. If you come to our website, we’ve got up to the minute patient information that just goes through your disease is, how you got it, what the symptoms are, what the likely treatments and diagnostics might be. Then there’s some really great information helping you understand all of the words. Liver disease has some big words associated with it. We’ve got a glossary and then we’ve got some information on the sort of clinicians you’re likely to meet, who you might find along your journey and how they can help as well as some questions to ask your medical team when you go back and see them.

“We also have a whole lot of lifestyle advice because with Liver Disease, or any type of liver damage, whilst there are treatments for some of the diseases, lifestyle adaptations are really a key part of it so we have a lot of resources to help with that.”

It’s overwhelming, you’ve come out of the Doctor’s surgery and unless you have been on a website like the Liver Foundations you really don’t know what to ask or where to go for help.

“We hear from GPs, we do a lot of GP education and they say, we need somewhere for people to go after they walk out of our office, you get 15 minutes or a long consult with the GP are only 20-25 minutes, specialists appointments can be really hard to come by depending on where you live so there’s a lot of information needed,” she said.

“We can provide the information that you need and we’ve got a support line you can ring as well, just to try and help people not feel so alone and confused.”

It is a service that is sorely needed given how prevalent liver diseases are in our society.

“One in three Australians is estimated to have some form of liver disease,” Sally explained.

“It’s really the biggest health challenge that no one has ever heard of and there’s a lot of work to do to let people know that looking after their liver is a fundamental aspect of their liver health and to help people who do get a diagnosis just come to terms with it and understand what they can do.

“The wonderful news is with the liver it is the only organ in our body that actually fixes it’s self – it’s called regeneration so that if you do change your lifestyle – your diet, exercise, reduce or remove toxins like alcohol, you can completely reverse a lot of liver damage and prevent a lot of the more significant diseases. It’s the sort of thing if we know about it we can really turn it around and stop it being a problem, if we don’t know about it, find out and take no action than that’s where things become a bit more worrying.”

For more information head to the Liver Foundation’s website Liver.org.au

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