What or where has been your most usef... - Living with Fatty...

Living with Fatty Liver and NASH

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What or where has been your most useful information source?

HelenHU profile image
11 Replies

Fatty liver and NASH isn't commonly understood so was there anything that you found really useful if you tried to find out more? An online article, a charity, your friends/family?

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HelenHU profile image
HelenHU
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11 Replies
mauschen profile image
mauschen

The internet is a great source of information however, I have concerns about how people from various education levels interpret the scuentific information. In the UK, NHS patient education services provide basic ( sometimes too basic ) information which can be both a help and a hindrance.

Even equipped with information from polar positions, I have found that GP's are not sufficiently schooled to respond to my questions. Forums like Healthunlocked on the other hand provide a platform for discussion, provide tips and encourage people to educate themselves on their own conditions. Nevertheless, in my opinion, doctors needs to be more on board. If they cannot answer our questions or struggle to know what to do then they need to refer us to specialist care.

For me, the fibroscan was an important duagnostic tool. Knowing that fibrosis was not detectable brought me relief however, the young female doctor was not a radiologist or even a sonographer therefore, her interpretation still haunts me. Specialist care is the answer in my opinion, the sooner the better.

Bootandall profile image
Bootandall in reply tomauschen

Are you saying that fibrosis is NOT detected with the fibroscan? That is how I was diagnosed with cirrhosis, confirmed via US and later, MRI.

jan-ran profile image
jan-ran

I discovered the book written by Michael Moseley, "The 8 week blood sugar diet". I was looking for treatments for diabetes, and did the diet. The book mentioned that the diet could get rid of nafld, and I found that it did that. A liver scan a year after the diagnosis showed that the fat had gone. Michael Moseley is well known in England as a presenter of tv programmes that focus on ways of improving health.. I learned that eating dairy fat did not put on weight or cause fatty liver. The fat which accumulates in the liver comes from carbohydrates and sugar overload. I don't know if this is the only reason for nafld . I understand that fatty liver also comes from drinking too much alcohol , along with other liver diseases. My gp at the time of diagnosis did not have any advice for me, and I was not referred to a consultant. My current gp is impressed, and I would like to think he might tell other patients that there is a way to deal with (non alcoholic) fatty liver disease.

jan-ran profile image
jan-ran in reply tojan-ran

I agree with mauschen, that healthunlocked is a great place to learn more relevant information about medical conditions, and share experiences.

mrsmerlin profile image
mrsmerlin

Without wanting to sound butt-kissy I have to say that the downloadable information leaflets from the site have proved invaluable.

I also read through the information available on various transplant centre support pages.

For support I'm on a couple of Facebook groups but Health Unlocked has been my crutch and amazingly supportive.

It's surprisingly hard to find support for NAFLD but Hep A, B or C, alcoholic liver disease, pbc etc have face to face support groups with appropriate support and advice.

Diagnostically it has to be the 2 multiscans I had done 8 no the apart where the degeneration is all too plain to see

Probably from joining support groups

angelatonew profile image
angelatonew

I completed a module in Nutritional Science at Surrey a couple of years ago and was pleased to note there are health professionals that are now taking this seriously. I would love to do more of my own research in to this myself but funding has always been a problem.

As with most things we need to raise awareness that this is serious if things are left unchanged - patients should be empowered to take responsibility for there own health and not just leave it to the Medics is my opinion!

JoyHazel profile image
JoyHazel

The internet and specific questions to my GI. I agree with an earlier comment that information about NASH is my difficult as most references are for Hep A, B, C and alcohol.

Sallywolf profile image
Sallywolf

I find my Facebook liver group more helpful than the rest of the net. While I can find helpful info using google, it takes a reeeeeeally long time to sift through the BS, whereas when I ask a question to a real person on FB, they actually take my whole question into account and do just give me the standard answer doctors have

MBChurch profile image
MBChurch

I found an article on the internet about a book by Julissa Clay, " The Non-Alcoholic Fatty Liver Disease Solution". The article said the diet, along with other suggestions, showed improvement in the condition.

I ordered the download of the book, and should get it next week. Hope this is helpful.

MBChurch

Ednoral profile image
Ednoral

WebMD.com is a good site. Plus this report on liver diet is very good if you want to go into the science of all of it. The Liver Friendly Diet by Wayne Eskridge.

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