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

HI all,

hope you have been doing well!

I'd like to revive this discussion that seemed quite interesting for a lot of you.

Do not hesitate to share your thoughts!

I'll tag some of the members here in case they haven't seen this thread 😉

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Take care!

Courtney

So my journey started when I was in my mid 20’s as I am now 67 years old. I had my thyroid out at that time and was then diagnosed with Hashimoto’s thyroiditis which was my first autoimmune disease. During this time my labs would always show slight elevated liver enzymes and was told it was much not to worry about it. So as patients we trust and listen to our doctors right? Fast forward to when I was 60 seeking answers to why my skin was always breaking out on my face, arms and legs. My dermatologist did testing biopsies and still nothing. So she preceded to put me on a strong med(can’t remember the name of it) and said I would have to get blood work done every week so she could monitor me. I asked what she was monitoring me for and she ask why are you asking which I told her I have had elevated liver enzymes for most of my life she said will maybe you have the celiac of the skin so she sent me to a gastroenterologist. This doctor did a series of test and this is when I tested positive for a antibody test in was diagnosed with autoimmune hepatiti(2 autoimmune disease), fatty liver and stage 3 cirrhosis of the liver. I was told after all the years with elevated liver enzyme’s even though it wasn’t out of range much this is what caused this illness to become so bad. I was on steroids for over three years and gained 70 lbs plus immunosuppressants(which I’m still on). I have since been off of the steroids and lost all the weight I gained. I now eat a very clean plant based diet( weight gain will elevate liver enzymes). So try really hard to maintain my weight. I have labs, ultrasound and see my hepatologists( she is on the transplant team with ochsner’s in New Orleans) every 6months now. My meld score has always and still is at this time 6. She saved my life. I will say this about myself personally I find when I was overweight my liver hurt me all the time that dull pain was terrible. Sorry this was so long but it was a long story and hard road for me.

Sending good positive thoughts to you all.

 treatments affects to liver.

One of my friends has been dealing with NAFLD for some time.

Hi everyone 👋

Living with NASH (or NAFLD) can come with a lot of invisible challenges that others might not always understand. Let’s open up this space to talk honestly about what it’s really like.

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➡️ What do you find to be the most frustrating or difficult part of living with NASH?
➡️ Is there anything you wish people around you better understood about your condition?

Your experiences matter and could really resonate with others in the community — feel free to share whatever you’re comfortable with 💬💛

Take care,
Somya.P, from the Carenity team 💞