Samantha
British Liver Trust, (lost her mum to NAFLD due to late diagnosis)
Samantha shares her experiences of her mother suffering with non-alcohol related fatty liver disease (NAFLD). Greater awareness of condition could help earlier diagnosis and save lives.
My mum was diagnosed with NAFLD on 19th April 2018 and sadly passed away just four days later. At her inquest, the coroner cited missed opportunities for diagnosis and treatment.
Living a healthy lifestyle
When my mum was younger, she was very active, running cross country for our local county and a marathon for charity. She also maintained a healthy diet. However, her mobility was destroyed by osteoarthritis and spondylitis, which led to her weight gain and subsequent knee replacement surgery.
My mum knew she had problems with her liver having had multiple liver function tests (LFTs) from 2004, which all had abnormal results. Despite this, she was not referred for any further testing as doctors did not believe she was at risk. My mum didn’t drink alcohol and avoided taking pain medication, but she was overweight which we now know to be a risk factor for NAFLD.
Liver disease is often diagnosed late because the symptoms are either vague or non-existent in the early stages.
Noticing behaviour changes
Just over a year before her death, we started to notice changes in her behaviour. She didn’t want to eat and her mood changed, she seemed very low and worried a lot.
Following the knee replacement surgery, my mum started to experience brain fog and muscle spasms. Both brain fog and muscle spasms are common symptoms of liver disease, but we thought these were side effects of her surgery.
Rapid deterioration
After a week of antibiotics, I visited her at home, it was the first time she had left her bed in days. As soon as she walked into the living room I was shocked at her appearance. I had seen jaundice before and knew something was wrong.
We got her an emergency appointment with her GP who agreed she needed to go into hospital. She underwent a number of scans and tests over the next four weeks,i all the while deteriorating rapidly. By the time they diagnosed NAFLD it was already too late. She had developed encephalopathy and days later suffered a stroke. My mum passed away surrounded by her family in hospital.
Delays in diagnosis
Liver disease is often diagnosed late because the symptoms are either vague or non-existent in the early stages but also little is known about the disease by both the public and healthcare professionals. I think, if there had been greater awareness, as the coroner suggested, my mum could have been diagnosed earlier and may still be here today.