Cirrhosis of the liver: Megan McGillin diagnosed at the age of 10

Megan McGillin, from Northern Ireland, was diagnosed with cirrhosis, or scarring of the liver, 11 years ago which stops her liver working properly.

Liver disease in children is rare.

A liver specialist said keeping fit and healthy plays a "critical role in maintaining the liver in a stable condition".

Cirrhosis cannot be cured or reversed, and many of the liver disorders that cause cirrhosis in children are not preventable.

In Megan's case, doctors do not know how she got it, but have said the damage could eventually become so extensive that her liver stops functioning, causing it to fail.

"[Doctors] told me, initially when I was diagnosed, that at the age of 18 that I would have a transplant, but I kept fit and well," Megan said.

"Then when I was 16 or 17, they told me definitely by 21 that I would need a transplant.

"When I turned 21 in November, I didn't get a transplant for my birthday.

"I just kept on powering through, so they have taken away any timelines now."

Liver disease such as cirrhosis, can also result in portal hypertension and cause an enlarged spleen.

In Megan's case this meant she had to give up contact sports which she said was a "major thing" for her.

She later got into rowing and rowed on the Irish high-performance squad for a couple of years while at school.

Megan said this kept her very fit and "as much as I struggled, it was a high intensity sport that I think kept me well all these years because I was constantly training and looking after myself on the inside".

She believes keeping fit has kept her liver functioning for so long.

Dr Girish Gupte, a consultant paediatric liver specialist at Birmingham Women's and Children's hospital, does outreach clinics in the Royal Belfast Hospital for Sick Children six times a year.

"Liver disease is extremely rare in children so that's why a majority of the population may not have heard about children having chronic liver problems," he said.

"The incidents of liver disease can vary from one in 10,000 within the UK population, to some of the other liver diseases which can be one in a million."

Dr Gupte said there has been an increase in chronic liver disease cases in recent decades, partly due to advances in testing but he also said he feels that environmental factors and lifestyle play a role in the increased incidents of liver disease in children.

"Not all children with liver disease need a liver transplant," he said.

"Most of these conditions can be managed with good medical treatments and with a good healthy lifestyle," he added.

"However, in some children there is progression of the liver disease to end-stage liver disease and these children do need liver transplantation, either as children or maybe as adults," he said.

"I think keeping fit and healthy, eating a healthy diet, preventing the accumulation of fat in the liver with a healthy diet, play a critical role in maintaining the liver in a stable condition in the long-run and trying to delay or avoid liver transplantation."

The 'liver of an alcoholic'

People often think of cirrhosis as a disease caused by long-term alcohol abuse.

While this is sometimes a factor in adults, cirrhosis in children often stems from a wide variety of liver disorders.

Explaining the severity of Megan's condition, doctors told her she "had the liver of an alcoholic", which at 10 years of age did not make sense.

"I'd obviously never drank any alcohol before, and my mum was gobsmacked at the idea that a doctor would tell me that I had the liver of an alcoholic," she told BBC News NI.

"That just shows the correlation between people having liver disease and this assumption that it's come from alcoholism," she added.

The 21-year-old has never drunk alcohol and does not plan to because of how it affects the liver.

'Opportunity to educate some people'

Megan said she has had mixed reactions when telling people that she does nott drink alcohol because she has liver disease.

The one reaction she does not like is "people saying, 'oh goodness what have you done? What were you doing in your younger years? How early did you start drinking or did you have a bad event with alcohol or drugs' that has affected my liver so much?"

The medical student said it does give her an "opportunity to educate some people that having liver disease doesn't necessarily correlate to drinking alcohol or being abusive to alcohol".

'My normal is different'

She said getting the diagnosis was "scary", but she knew she could live with the condition, albeit with limitations, as the condition makes her extremely tired.

"On the outside I look normal, I do normal things," she said.

"Now what I call my normal is different from my peers' normal. I have to have limitations on myself - on certain things I can and can't do.

"It is mostly about managing my energy levels."

While she is positive about the future she said you "can't really have a plan" with liver disease.

"I could wake up tomorrow and be completely yellow, jaundiced skin and I would know my liver was then beginning to fail," she said.

"That would end up eventually with a transplant.

"That could be tomorrow, that could be next week, five years, 10 years, I just don't know," she said.

Megan said if and when that time comes, she would not hesitate as "to be allowed that opportunity to be given an organ from somebody else is just amazing".

She added: "Organ donation really is life-saving, but it can still be a scary decision to make because you don't know what's going to happen.

"You don't know if you'll be poorly, if your body will accept it or if there are any secondary diseases or infections that you get after having that surgery because it is a major surgery.

"My liver as such is working.

"It's not working at full capacity but whatever it's doing it's doing something right.

"You have to wait until it gets to a certain level of liver function, or your condition has affected your lifestyle in such a way that you're extremely poorly, but the longer my biological, the liver I was born with, stays in me it's going to be better." 

-bbc