How do people learn they have NASH?

I was diagnosed with NASH 3 years via biopsy by me being my own advocate. I felt something was not right. I was having symptoms and every test was coming back normal except my liver enzymes . I was bloating so bad I looked 6 months pregnant and had a constant pain from under my right rib cage that I now felt in my back. I now suffered a daily itch all over my body. I was diagnosed with fatty liver 20 years ago and always told it’s common, just lose weight and exercise. The ultrasound showed fatty liver like always but this time an MRI was ordered because a cyst was seen on the ultrasound. The MRI came back a 3cm fluid filled cyst- no surgery needed. It would dissolve on its own. Eat healthy and exercise, that(s) all you can do (I was told). I was frustrated by that point and demanded a biopsy.

At that time, I was down 50lbs and walked 5 miles a day and on Sundays hiking 10 to 15 miles. Yes, I was still overweight but in my best health. I did finally get the biopsy and I was diagnosed as NASH stage 0-1 fibrosis. I showed very mild fibrosis and my new gastroenterologist said I was on the fence and at a stage (where) it was reversible. Eat a clean diet, no preservatives, no prepackaged foods, exercise, only two glasses of wine per week (I was told). The very first time I heard clean diet and no more than two lbs of weight loss per week. 20 years of all kinds of fad diets and eating prepackaged foods, not once have I been informed (of) the importance of a clean diet until that day. I walked away educated for the first time. I ate clean for a year and my symptoms subsided, my enzymes were normal. I thought, great, I’m better, I must have reversed it.

I injured my knee and there went my daily exercise and I started bad eating habits and put on 10 lbs. My symptoms returned and I kept coming across ads for NASH liver pharmaceutical studies and I found one near me. I thought I wouldn’t be accepted since they were looking for NASH patients with stage 2-3 fibrosis with no chronic liver disease. They did a biopsy along with a complete liver panel and MRI. I got the call and was so excited, I would take a drug that may help me. After I signed all the consents and started my medication, it finally hit me that I qualified because I met their requirements. I’m now a stage 2-3 fibrosis; how did that happen so fast? It’s been less than two years since my initial biopsy.

(At) my next appointment with my study doctor I had so many questions. I can say I have a great study doctor and team. I am now 6 months into the study. The hardest part of this disease is that there is no current treatment and my family’s reactions. Because I do not look physically sick, some just can’t believe the seriousness of the disease. My son who researches everything has taken the news the hardest due to statistics of life expectancy. The hardest part is coming home after getting certain results and trying to keep a poker face when a recent Fibroscan test came back showing advanced fibrosis. It’s not an easy disease to live with and primary care doctors need more education on NASH. I know now being overweight, having diabetes, PCOS, and insulin resistance contributed to my NASH. Every day is a struggle, just because I feel better does not mean (I should) stop eating clean. I hope the study helps me and if it doesn’t I hope I contributed to a future treatment regimen for NASH. I pray for a cure one day soon.

Editor’s Note: These are the exact words of the submitter. GLI has added words in parentheses, added punctuation where helpful and/or corrected typos or spelling errors.

Donna Cryer