What is the most frustrating or difficult aspect of living with NASH (NAFLD)?

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Patients Non-alcoholic fatty liver disease and NASH

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Hello everyone, 

How have you been? I thought I would open this discussion to spark some new conversation! emoticon cute

So, what is the biggest challenge you face while living with NAFLD or NASH? Is it pain, fatigue, weakness, or something else? Or is it the lack of awareness of doctors and the general public? Have you had to change aspects of your daily life or routine because of your NAFLD or NASH? How do you cope with these challenges?
@Stammer@Mark71@Shadylee@MJ2015@Kabyle@lnewbury@Togetbetter@chrisndeb08@Mprivera@Donnarose@Taylor10@PaulaG@Ram1948@Jen-ny@Jbarry35@Candygal2020@sbrown45@Foodlover@susan0814@jnmason999‍ 

Feel free to share your stories and experiences here!

Take care,
Courtney

Beginning of the discussion - 9/8/20

What is the most frustrating or difficult aspect of living with NASH (NAFLD)?


Posted on

@Courtney_J I think you hit it on the head for me with the lack of knowledge. I've felt very unsure and in the dark about it since I was diagnosed. I feel like they don't really know how to treat it so you just treat the symptoms or related conditions. I had NEVER heard of it in my LIFE before I was diagnosed and my doctor didn't really have any advice for me on how to move forward. 

What is the most frustrating or difficult aspect of living with NASH (NAFLD)?


Posted on

@MJ2015 Yes I totally agree. I think "frustration" and "confusion" are two good words that sum up my overall experience with this disease. 

What is the most frustrating or difficult aspect of living with NASH (NAFLD)?


Posted on

For me, it's the anxiety, honestly. I had no idea I had this and that there was anything wrong with my liver. I feel like I've been put in a boat with no oars headed for Niagara Falls. I have no real treatment for it, no information, and I know that for all I know behind the scenes it could be getting worse. Hoenstly sometimes it keeps me up at night. 

What is the most frustrating or difficult aspect of living with NASH (NAFLD)?


Posted on

Been dealing with NASH for a few years and yes, the general lack of information (or conflicting information) you find out there.  I will say I felt my absolute best pre-COVID when I was going to the gym 3 days a week and eating healthy (low salt, low sugar).  But you keep hearing different things (like the recent news about Stevia and NAFLD/NASH.  I remember when I was told I had a fatty liver (15 years ago in my 30s).  I asked if I should be concerned, and my doctor said NO, it's pretty common.  Ten years later I had liver damage and NASH/Cirrhosis.  It's VERY upsetting.

What is the most frustrating or difficult aspect of living with NASH (NAFLD)?


Posted on

@Courtney_J Mine would be having Nash and ovarian cancer and the treatments affecting my liver enzymes and what and how much chemo I can receive. 

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