There are over 100 types of liver condition; some are rare and others can be prevented. 20% of the population is at risk of liver disease, there are many causes people don’t know about.TThe British Liver Trust provides advice and information to patients and families, campaigns and works with healthcare professionals to improve early diagnosis and patient care, raises awareness of how to look after your liver and supports research. Thank you for your support, and please don’t forget to Gift Aid your donation if you are a UK taxpayer.

My mum was diagnosed with fatty liver disease in 2009 and by 2016 this developed into non alcoholic cirrhosis of the liver or NASH.  In June 2022 we went to see her consultant to be told she had terminal liver cancer or HCC and given a prognosis of 6 to 12 months.  My mum passed away peacefully in January 2023.  

My mum did not smoke or drink alcohol.  My mum's diet was relatively balanced and healthy, and like most people treated herself to a cake etc.  Her exercise could've been better.  So to have such a progressive decline in her liver function is suspect.  

Without going in to too much detail we do not think our mum was given a fair treatment over these years.  From what we have read about other's who have the same disease have been put on a liver transplant list as soon as they were told of the cirrhosis.  My mum's experience seems to be one of neglect and being dismissed whenever she has raised concerns of family history and a childhood incident of a liver problem.  We have since put in a complaint,  but no surprises we have been fobbed off.

When my mum informed them of this incident in childhood, and what we now know since 2022, is that they should have checked for a deficiency known as alpha 1 antitrypsin deficiency.  In addition they should've checked for autoimmune disease associated with the liver.  It is rare for liver problems to occur in the liver with A1ATD in comparison to lung disease, but i do feel like from the way my mum's liver problems progressed the A1ATD seems to be a factor.  

From a biopsy done in 2020, which my mum did not find out the results until 2022, there was a query over something called PBCs.  They found traces of copper.  However, because they left the biopsy too late and her liver was now too damaged they were never able to confirm the autoimmune disease.  A biopsy request, according to her notes was asked before 2016, and this was not done.  For my mum, she had one scan after another and told everything was inconclusive.  My mum was never offered a dietician.  

It seems to me there is a lot of inconsistencies within gastroenterology and heptology and an unfair system. However, this is from our families experience.  There is a lack of education of other factors, including genetics and autoimmune disease that are a contributing factor to liver disease, and not just obesity and alcohol.  This is why I want to raise funds for The British Liver Trust so that their research can be funded.  Moreover, I want them to be able to find a means to be able to reverse the damage that can be done to the liver following cirrhosis without having to do a resection (cutting away the damaged liver), or waiting for someone to go into liver failure to do a transplant if they have been fortunate enough to go on what seems an exclusive transplant list.  

If you have a fatty liver and not at the cirrhosis stage you can reverse the effects with a strict diet (Mediterranean is recommended) and exercise, quit smoking and reduce or stop alcohol intake.  

Love your liver.