Being diagnosed with liver disease as a teenager turns your life upside down. Sixteen years on from receiving that shock diagnosis, Bethan shares her story.
I was a happy healthy 15 year old until a friends mum (a nurse!) noticed that I had yellowing of my eyes – so off we went to the doctors who quickly referred me to the hospital. My family were warned this could be serious so we went home, packed an overnight bag and off we went to the children’s ward at our local hospital in Bangor.
After days and days of tests, it was decided I was to be transferred to Birmingham Children’s Hospital and every time I see their red balloon logo, I still think of those who have donated in some way to the hospital’s charity.
Whilst at Birmingham, I had biopsy after biopsy of my liver, which I can only describe as an apple corer taking a slither of your liver for testing. This sounds really strange and of course I couldn’t feel a thing but it’s very interesting when you see what’s been taken!
Adjusting to new normal
I don’t remember the exact day I was told I had autoimmune hepatitis but I am lucky enough to have lots of medical professionals within my family who helped us understand medical jargon. The doctors and nurses on the ward were also excellent.
Following my diagnosis and discharge from hospital I have to say that life carried on pretty much as normal, but with added medications and disruptions to school for my hospital appointments. These were every month at first, then bi-monthly, then every three months until I went down to six monthly check-ups. I used to go to school in the morning, then Mum would pick me up at lunch time to drive the four hour journey to Birmingham, stay overnight and go to my appointment the next day, then drive home.
Telling people I had a liver disease became the normal thing to do and I suppose it made me special in a way. My main issue at the time was the medication – I had always had a big problem swallowing tablets, so when you are suddenly prescribed around 20 tablets per day – this is really difficult! I had soluble medication instead, so when I stayed at friend’s houses, their parents needed to know and friends wanted to know why I was drinking so many shot glasses in the morning! (Promise, it was my medication and some of them tasted awful – it’s much better to swallow the tablet!)
I’m happy to report that, shocking though my diagnosis was, it didn’t affect my social life or education – I passed my GCSE’s and A Levels and went onto University where I gained a 2:1 in my degree.
Alcohol is obviously a big part of a social setting, especially at University, so you could say that affected my life a lot. I did drink sometimes, but not every night. After all, I had my precious liver to look after!
Being on steroids meant that I put on lots and lots of weight and I remember people saying how healthy I looked. I didn’t feel it, I hate looking back at pictures but it wasn’t my fault I was poorly. I have a liver disease. To any other young person who has to take steroids due to their liver condition I would just say remember that steroids will save your life – and education will help you understand how important that is.
Education is KEY when you’re diagnosed with a rare condition. At 15, and for years afterwards I understood the basics of my liver and that I had to take steroids for the rest of my life, but my friends didn’t know what I had or how I’d got it. People hear hepatitis and think the worst – but educate yourself, to educate others on your rare disease and you’ll be absolutely fine.
I was put in touch with CLDF shortly after I was diagnosed. Laura was the young person’s support officer at the time and she used to always check in with us via phone call, ensure we had everything we needed and came to say hello when we were at the hospital. CLDF provides the support and a community that no one else can – you get to meet with fellow liver disease patients and talk about your experiences. As mum and I were back and forth to Birmingham over a 10 year period , we decided we wanted to fundraise for CLDF, so we did quizzes, bingos and I even did a zipwire ride to conquer my fears! It felt good to know that we were helping other young people to get the same support that we were receiving.
Live life to the full
Through all the research I had done on my condition following diagnosis, I had learned that only 2% of patients with autoimmune hepatitis can remain off medication – the majority are on medication for life and I’d accepted that. So it was a great surprise eight years ago to be taken off medication. I’ve had my ups and downs during that time with regular blood tests, ultrasounds and fibroscans, but to continue with six monthly check ups and be in that 2% makes me really proud of my little liver!
My intention now is to remain, happy, healthy and to live life to the full as I have been since my diagnosis in 2007. I’m lucky to have an interesting job, working in HR for a digital health company. I’ve been to over 30 different countries since my diagnosis, embracing every opportunity, exploring and experiencing new things, climbing mountains, paddleboarding, cycling, drinking the occasional gin, baking and then eating the bakes and enjoying life in my little home with my two cats…
My advice to any young person who gets the news I did as a teenager would be:
- ️ swallow the tablets
- ️ go to your appointments – all of them
- ️ keep an eye (!) on the whites of your eyes for discolouration
- ️ educate yourself and ask questions on your condition/ disease
- ️ talk to your family, CLDF and others
- ️ join a support group
And most importantly …
- ️ live your life to its fullest. There is nothing that you can’t do!