Carol Richardson, 55, suffers from the rare auto immune condition primary biliary cholangitis, or PBC, which attacks the liver ducts and for which there is no known cause or cure.
Despite being unwell, the former NHS secretary has raised £5000 for the PBC Foundation in the last few years.
Carol was diagnosed in 2007 after years of feeling poorly. She had many of the symptoms associated with the illness, such as tiredness, dry eyes, nose and mouth, itchy skin.
It was confirmed following tests and by that point her liver disease was between stages 2/3 in terms of severity and she was suffering from fibrosis on the liver.
Her illness has now progressed to stage four and she has cirrhosis of the liver which seriously affects its ability to function properly.
She has been attending the transplant centre in Edinburgh since last year to determine when she needs to go on the transplant list. However, she is hoping to put that off for as long as possible.
Determined to remain positive, Carol, who is married with two adult daughters, said: “This disease will live with me. I’m not living with it.”
The family has taken part in a DNA study through Addenbrookes Hospital to try and find out more and much to Carol’s relief, both her daughters have tested negative for the disease.
She is now working with the PBC Foundation and hopes that sharing her story will increase awareness locally.
* PBC affects around 1 in 400 people, primarily women. Symptoms include severe tiredness, chronic itching, joint pain, dry eyes and mouth and in the most severe cases, can require a liver transplant. It is not related to alcohol intake or abuse. To find out more go to www.pbcfoundation.org.uk.