If you don't care about liver disease... - Living with Fatty...

Living with Fatty Liver and NASH

8,264 members2,163 posts

If you don't care about liver disease maybe you should just ignore this

nash2 profile image
nash2Partner
6 Replies

If you are a patient, caregiver, or someone who cares about liver disease. I need your help.

We are providing patient focused information in our upcoming webinar so the subject should be of interest to you, but there is a larger issue here. There are a lot of problems with how we are managed, as patients, by the system. For example, it makes me angry when I hear from people who first learn about their disease by being told they have cirrhosis. That just should never happen. Another concern is that people get all kinds of crazy advice from people trying to sell them miracle products that are not useful. Much of the official information isn't very helpful either, and a lot of docs don't study nutrition so good advice can be hard to find.

How are we to deal with issues like these? As patients we have to become better informed but most importantly we have to speak up. We can choose to just suffer quietly and hope things improve. Most people do that. Personally, I can't stand to be passive. I have cirrhosis because of a multiyear diagnosis failure. Many of you have had similar experiences with statements like fatty liver, no big deal. That annoys me a good bit.

I'm also here to save my life. If I can make the system move faster in any way I may get therapy that will let me not die too soon of liver disease. I'd like that.

So what does that have to do with you? We are the Voice of NASH but when I talk to companies or agencies about things that, as patients, we need, they always want to know how big my army is.

If you are in this fight, you need to be counted. Even if you can't watch this webinar live, sign up, you will get a link to a recording. Even if you won't watch it, get the link and send it to someone you know who is impacted by liver disease. Maybe it will help them. Even if you just want to say you agree and want someone to know, register. It is a free service and we aren't selling anything.

That's the story. If you care, help us. Click this link to register

fattyliverfoundation.org/r?...

Written by
nash2 profile image
nash2
Partner
To view profiles and participate in discussions please or .
6 Replies
Millie09 profile image
Millie09

👏🏼👏🏼👏🏼👏🏼

Sunshine1990 profile image
Sunshine1990

Signing up!💚

Jkf1 profile image
Jkf1

Registered

infosearcher profile image
infosearcher

Dang! I missed this webinar. Any chance this was recorded or is there a replay available?

pigsty profile image
pigsty

I have NASH at cirrhosis level.I have been given little advice...just 6 monthly blood tests and ultrasound

Coligate123 profile image
Coligate123

Hi that’s what happened with me and come back in six months. Well lose more weight and exercise which I was already doing I’m really worried and trying even harder.Pat

Not what you're looking for?

You may also like...

One of the groups most at risk of liver disease is long haul truckers. We have joined with the HTAA to help educate them about health risks

We are working with the Healthy Trucking Association of America, (HTAA) to help educate and support...
nash2 profile image
Partner

Do you have NASH, F3 or F4, and have an interest in helping educate others about this disease?

There is growing interest in educating people about the risks of liver disease and I've been asked...
nash2 profile image
Partner

I'm surprised that no one has any issues with the way liver patients are treated. I didn't think I was the only one.

A few days ago I asked for help putting a list of things that are wrong with how liver patients are...
nash2 profile image
Partner

Are you interested in helping educate others about this disease? You might consider this opportunity

A good friend of ours is the head of patient communications for one of the companies working to...
nash2 profile image
Partner

Did you know that liver disease can steal your mind? If you have had an HE episode, do you have advice for others not yet there?

When the liver is damaged enough that it can no longer do its job of removing toxins from your...
nash2 profile image
Partner