Being newly diagnosed

My name is Mirri and in May 2023 I got diagnosed with autoimmune hepatitis or AIH for short. The diagnosis was a shock to me and my family as I did not display any serious symptoms until I became jaundiced. Despite being jaundiced, I thought nothing was wrong and I was just a bit run down but I was wrong and got diagnosed with a life changing condition. Eight months down the line and I now have a good understanding of my condition and what it means to me even though I am still learning every day.

My biggest struggle so far has been the summer. I struggled with heat before I got ill but my medication and condition made the summer a lot harder to deal with. The summer was one of the points where I was on a massive amount of medication and my symptoms were unbearable. I had a school residential which I was determined to have a good time at. It was my first time without my mom and doing a lot of exercise since getting diagnosed which I was worried about. The trip made me realise that I can still do things with my condition, and I am still independent. However, because of how weak I was I didn’t manage to do rock climbing which is something I loved before. I was really upset but I now realise healing takes time and I am not the same as I was the last time I went rock climbing.

There have been many things that have helped me in my AIH journey. For example, CLDF sent me a pill box when I was struggling to remember when I had taken my medication, my previous school gave me the opportunity to tell people about my condition so my classmates would understand, and having accommodations like a queue pass and reduced timetable made school feel more accessible.

It also felt really lonely to begin with as all the people I saw at the liver unit were a lot younger and all the people on my mom’s Facebook groups were a lot older. In September I had my first Hive Hangout with CLDF where there were other children my age who had liver disease. It was so comforting to know I wasn’t alone.

My top tips for other children with liver disease would be:

Write things down- a big symptom of mine is forgetfulness but writing things down not only helps me remember it is also easier to see what symptoms affect me the most so I can tell my consultant.

Get as involved as you can- learn what your medications are called and what they do, put your own medication in pill boxes, speak to CLDF, and speak up if you are not feeling well.

Tell people about your condition- this will reduce the constant questions which get very boring to answer all the time and people will understand that you might not be the same energetic, spontaneous person you were before.

Keep track of your triggers- what makes you feel bad after doing it and how can you reduce how it affects you.

After all this I have finally achieved normal blood tests and I am confident within my condition. I’m so grateful for my family, friends and CLDF for making this massive change in my life so much easier.