Eileen

What is your age and gender?

24

What is your liver condition?

I have Alagille’s Syndrome; which means that there is reduced bile flow within my liver resulting in limited fat absorption. It also affects some of my other organs like my heart and kidneys.

How old were you when you was diagnosed?

I was born with it.

How did you feel?

I don’t remember.

How were you told?

I grew up with it so I was never really ‘told’.

How does it affect you?

Looking back, I have realised that I have achieved a lot despite things. I have been to university and come out with a degree in Fine Art; I have gained a wide range of experience working in London as an Asian Wedding photographer and I have travelled many places around the world, fuelling my love of travel. Most recently I spent almost a year working in a youth hostel at the foot of Snowdon in North Wales and a month in a hostel near Robin Hood’s Bay.

Are you on any medicines?

Throughout my life I have taken lots of different medication and had a tube in my nose and stomach so that the amount of nutrients and fat I was get was greater.

How often do you go to appointments?

I go every couple of months

How are you treated there?

We generally discuss how things are progressing, what needs to be done and I have blood tests.

What are the good and bad things about having a liver condition?

Blood tests were always a challenge for me as well as many other medical procedures. Anything that reminded me that I had an illness was a real trauma to encounter and I never appreciated what people did to help me because I was scared. Because of these treatments, I have, in the past, seen my condition as a hindrance in life and my confidence and ability to experience life was affected but as I have grown older I have learnt to come to terms with and accept my disease. I now work with it by using my experiences to become more open-minded and more determined to achieve goals. I have encountered different ways of coping, learning something new every time. Even though I have had many ‘negative’ experiences, ones which I wish never to go through again, I can look back and learn from them, turning them into a positive learning experience.

Does anything worry you about having a liver condition?

This is by no means the end of my journey. I know that there will be many more obstacles to overcome through the course of my disease. I still do sometimes suffer from lack of confidence, worrying about what other people think. However, I feel better prepared to face these difficulties when they happen rather than worrying all the time about the ‘what if’.

Have you got any messages for other young people with a liver condition?

Pushing yourself into a scary situation can often surprise you to the outcome and more can be achieved. Now, I am working towards a career in charity, hoping to use my art to promote charitable work and raising money for good causes.