Aaron

What is your age and gender?

18

What is your liver condition?

My condition is Alagilles Syndrome. Alagilles Syndrome is where the canal inside the liver is missing some of its doors, Bile Ducts, this means everything I eat and drink goes straight to the stomach. So all my blood rushes there to work hard to digest it quickly. This produces too much acid though which causes indigestion, heart burn and some of the acid even goes into my bloodstream which makes me jaundiced and makes me itch a lot.

How old were you when you was diagnosed?

I do not remember being diagnosed with my illness as I was 3

How did you feel?

As a child I always felt I was special but by the time I reached 11 or 12 I realised that it wasn’t good to be special. It wasn’t good to go around in public with my tube on full display. The people whose stares had once made me feel special now made me feel scared and odd and alone.

How were you told?

As a child I began to learn about my illness as my parents told me more about it. This is one of the reasons why by the time I was 11 I was uncomfortable wearing my tube because not only did I feel very self-conscious but I also became aware of what it did.

How does it affect you?

My liver disease even today feels crippling at times. I have a heart disease also which affects my circulation so things can be very difficult. My main side effects of liver disease are tiredness and itching. I do no sports whatsoever and need various concessions such as a disability bus pass to get me around places.

Are you on any medicines?

I am on countless types of medicine which I can’t even name but needless to say with me studying for a degree I have to plan my time very carefully

How often do you go to appointments?

I see various doctors too but I try to get appointments during the holidays.

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

Liver disease is difficult as I am sure you all know but it’s also a blessing. I am now a Christian and if people ask me if I would change my life to not have liver disease I would say no. That is because I have met such wonderful and amazing people.

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

Please whatever you do though think before you act.