Abigail

What is your age and gender?

16

What is your liver condition?

I have auto immune liver disease

How old were you when you was diagnosed?

I was diagnosed at 15

How did you feel?

I was clueless, and had no idea about the illness, I am lucky because coming from a family of doctors, they all explained to me what it was and the doctors in the hospitals were also very good. When I realised what was wrong with me, I was shocked and upset but I didn’t let it bother me, a couple of months later, I did cry about it now and then as I was only coming to terms with what was the problem.

How were you told?

I was admitted to hospital in Bangor, they sent me to Birmingham after two weeks, Birmingham then did many tests and ultra sounds to find out what the problem was, they still weren’t sure so I went for a Biopsy and then my doctor sat down at my bedside with my mum and my two cousins (who are both doctors) and explained everything.

How does it affect you?

Knowing what’s wrong with me, I am unable to drink when all my friends do which makes me feel weird around them and as if I can’t be bothered when they are drinking, but I live my life and all of my friends understand what is wrong with me. Nothing much has changed.

Are you on any medicines?

I am, three types and I’m also on steroids.

How often do you go to appointments?

When I was first diagnosed I went every month to Birmingham, and every week for bloods locally, but now (almost a year later) I am going up to Birmingham every three months, and only have blood tests locally every month.

How are you treated there?

I personally thought I was treated much better in Birmingham Hospital, but that might be because it is an actual children’s hospital. I know being 15, my mum was the one that had got to make the decisions but I am mature, and can decide for myself (as Birmingham told me), so liked being spoken to directly by the doctors.

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

I am glad that I was diagnosed now, because if I was older, the consequences could have been a lot worse, so that’s a good point, although one bad point is that all of my friends go out to parties and get drunk, whereas I go with them, but don’t seem to have such a good time because they are all drunk, but I do still have fun. Also, having to take all the medications, I am on four medications, daily, and because I am unable to swallow tablets, because I chew everything I have to have liquid, the taste of that is horrible, and takes time in the morning.

Does anything worry you about having a liver condition?

I worry about what is going to happen in the future with everything, and will I be on steroids for the rest of my life, although they are hoping to have me off most of my medication by the time I’m 18.

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

Don’t bottle things up, and let those know if they are hurting you about your condition, just live life as normal, and you will come to terms with it. Talk to others with similar conditions if possible because it helps a lot.