Should nonalcoholic be removed from the name of fatty liver disease, do you have an opinion, would you like to participate in the decision?

[nash2]

AASLD has contacted the patient community through GLI about participating in a NAFLD nomenclature review and development process. They are aiming for approximately 200 total participants to take part in upcoming surveys and a planned face-to-face consensus conference.

As part of this process, Global Liver Institute has been given up to 25 patient slots to participate. To participate, AASLD is asking that participants be willing to:

• Respond in a timely manner to communications related to the consensus development process.

• Complete multiple rounds of in-depth consensus development surveys (2-3 rounds expected) over the next several months.

• Participate (in-person or virtually) at the 2-day consensus meeting planned for summer 2022.

• Completion of a final Delphi survey round.

Let me know if you would like me to submit your name.

[ThyroidDeb]

I am thinking about this. Yes, I'd like to see it removed but what would that really mean? The one thing that stumps me between alcoholic and non are the differences in scoring. Isn't fibrosis fibrosis and cirrhosis cirrhosis..no matter what your desease title is? Why a 19 fibroscore for alcoholic an F3 but for non anything over 14 is F4. I would really like to see a change in the name cirrhosis since it's about 200 years old!!Deb

[nash2 Partner in reply to ThyroidDeb]

Do you want me to put your name in as a volunteer? I don't know how many patients they will really accept on the panel but if you want to try it I'm happy to do it.

[ThyroidDeb in reply to nash2]

Not yet, still thinking...

[Cat551]

Love to see the name changed to leave off the non-alcoholic part. I won’t be able to participate but hopeful for the name change.

[Alterity]

I'm always willing to help with NASH, You can submit my name anytime. Thank you

[nash2 Partner in reply to Alterity]

can you message me your name and email address to send to the organizer

[Justice1872]

Nash. Please submit my name.

[nash2 Partner in reply to Justice1872]

can you message me your name and email address to send to the organizer

[TwirlerGirl]

Hello—I have a strong opinion to leave it. So much judging from new medical providers when you relocate, when you say liver disease. That NA puts it in perspective. Now if we could just get my new docs to stop assuming NASH is only obesity derived. Smh. Count me in to participate if there’s a spot. Thanks for all you do for us.

[gramajaci in reply to TwirlerGirl]

Agreed!

[nash2 Partner in reply to TwirlerGirl]

can you message me your name and email address to send to the organizer

[nash2 Partner in reply to nash2]

can you message me your name and email address to send to the organizer

[ejbliver]

Need to leave it on. It is a great way to say "yes, i have a liver problem, but it is not from alcohol abuse". I have seen where someone was accused of the liver problem as being from drinking. This helps identify as not a self induced condition, and something we don't have much control over.

[nash2 Partner]

we need that point of view on the panel also, can you message me your name and email address to send to the organizer

[Maxy6 in reply to nash2]

I think we need to change a lot more than the terms but I will volunteer.I have emailed you my info.

[Muse12]

Yes take it off, if its non alcoholic then why the need to mention it?

[NYLassie]

I am interested in participating. Thank you.

[NYLassie]

Personally, I don't think the "non-alcoholic" should be removed. People iften assume that liver damage is caused mainly by excessive alcohol consumption. I think letting people know that one can have liver disease not caused by alcohol, and that other lifestyle choices can seriously damage the liver.

[Sarahvit]

My son has NASH and he doesn’t drink alcohol. Taking off the nonalcoholic from fatty liver disease would leave it to assume that all fatty liver disease is alcohol related. This would lead to judgement and bias my medical and non medical personnel who are providing care or in the lives of patients who have NASH or Nonalcoholic Fatty Liver Disease. I just feel this would take away the validation that not all liver disease is alcohol related.

[nash2 Partner in reply to Sarahvit]

Hi Sarah

That is one of the debates. If you would like to be part of the panel that is making recommendations message me your name and email and I'll nominate you.

[Sarahvit in reply to nash2]

Is this for the US too? I’m in the US didn’t know what all is involved. I just reread your post. My son was the one who was diagnosed with NASH. I suspect that my liver is fatty but as far as I know my liver functions are normal.

[nash2 Partner in reply to Sarahvit]

This is a project of the AASLD the US professional liver disease doctors association. There is a similar project going on in Europe.

[Sarahvit]

I just message you. I thought about it and decided why not I need to redirect my energy to something positive. To fight for people like my son who has nonalcoholic fatty liver disease.

[BU2B]

Count me in. I’m for leaving things name-wise as they are. There’s enough confusion between professional and non professionals as it is. If you’ve ever been in an E.R. and had nurses loudly question if you weren’t not only alcoholic, but a lying one you would know where I’m coming from. 😜