Charlotte has some words of reassurance for young people who are diagnosed with a liver disease.  

 

I was 18 years old when I was diagnosed with the rare liver disease, autoimmune hepatitis, and suddenly my carefree life wasn’t the same. Taking up to 15 tablets a day and being told I would need medication for the rest of my life was difficult to accept.  

No teenager wants to be on medication that has side effects that cause things such as weight gain, mood swings and acne, as well as of course not being allowed alcohol (any student’s worst nightmare.) Juggling my condition symptoms, medication side effects and appointments while trying to maintain a “normal” life with my education, work and friends can prove challenging and at times overwhelming. 

 Immediately after diagnosis, I began researching information about my condition, going down rabbit holes of the worst-case scenario and desperately trying to find someone in the same situation to relate to and tell me it would be OK. 

The problem with a rare disease is that it’s not that easy to do this but this is where Children’s Liver Disease Foundation came in. The charity provided a space to connect and chat with people in similar situations. They also have a great help and support team who provide advice on how to manage my condition. 

Over a year since my diagnosis, I can honestly say I am OK. I’ve just finished my second year at college, and I’ll be going to university in September to do social work. If you have recently been diagnosed with a liver condition, you will be OK. Contact CLDF, you’ll have the comfort of knowing that there are people to talk to and you can help and support each other.  

 I’m hoping my story will help others in the same way that other people have helped me.  

 

More information on our support for young people here 

 

Christine instinctively knew that there was something wrong with her little boy, Idris, and is very glad she followed her gut reaction as she explains here.  

 

Let me take you back to the spring of 2023. My happy, healthy, and beautiful little boy (who was 18 months old) suddenly woke up with yellow eyes. No other symptoms at all. I asked my husband, Rhys, who attempted to slow down my now accelerating thoughts, but my mother’s instinct kicked in and I just knew something was wrong. 

 That day in May, we rushed to the GP, who initially dismissed our concerns. Thinking ‘eyes’, our next stop was a high street optician, who advised us to call the 111 service for a view. We were admitted to our local hospital that same day for initial liver function tests and I distinctly recall the ALT being over 50 times the World Health Organisation recommendation. 

Fast forward two weeks in our local hospital and two weeks at Birmingham Children’s, we left with the possibility this was all caused by a virus that was going to go – and we could resume our family life together. 

But Idris’ blood tests didn’t get better. We will always be thankful that apart from the yellow eyes and blood tests, there were no other ‘concerns’. 

In the summer we were invited back to Birmingham’s Children’s hospital for a liver biopsy. I should say here that we can’t praise the staff at Birmingham highly enough for all their help and support, both then and now. 

We’re very grateful to 14 year old Mirri who has previously given us a real insight into what it’s like to be diagnosed with autoimmune liver disease in your teens https://childliverdisease.org/coping-with-liver-disease-at-school/ In her latest blog, she tells us how she fared on the expedition for her Bronze Duke of Edinburgh Award.

My name is Mirri and just over a year ago I got diagnosed with autoimmune hepatitis and was put on medication that still affects me on a daily basis. My fatigue and other symptoms made me and some of my teachers think that I should wait a year to do my Bronze Award, but DofE was something I had wanted to do for a long time so I didn’t give up and I have now completed my bronze Duke of Edinburgh award and I am hoping to do my Silver next year!

For part of the Bronze Award you have do to volunteering. I volunteered for CLDF and I loved it. I helped make quizzes and wrote blogs and I really enjoyed it. The expedition, however is an essential part of it and my biggest worry going into it was that because of my fatigue I wouldn’t be able to complete it and that my body wouldn’t be able to cope with the amount of walking I had to do and the environment that we would be in.

Luckily my school allowed me to have a day bag where I could carry my lunch and equipment for the walk without the extra weight of my sleeping bag and other things for the trip. This helped massively as there wasn’t as much weight on my joints (which I get pain in). Another accommodation that I got was that I could get taken to the next checkpoint by car throughout the walk if I got tired. However, I didn’t use this for a few reasons. The first was the checkpoints were very far apart, therefore when I needed help the most, we were in the middle of a field so I had no choice but to carry on.

The second reason is that my group weren’t completely understanding of my condition and felt it was unfair that I had the opportunity to do this and I didn’t have to carry a massive bag. Next time though, I would definitely use this accommodation and make my team more aware and understanding of my condition beforehand.

The best part of the whole expedition was that I got to be independent. After being diagnosed with a liver condition, I felt like I was always relying on the people around me but DofE meant I had the opportunity to do my own thing and it reminded me that I am just as capable as I was before my diagnosis.

The hardest part was definitely pushing through when I was struggling. At one point we had to use the emergency phone call to the school because of how I was feeling when we were less than halfway through. When I felt unwell I asked what the route ahead was like. Luckily the majority of the route was flat but if it was too steep or muddy I would have used the opportunity to go the next checkpoint.

At one point we got extremely lost and ended up walking miles in the wrong direction which at the time was very stressful but at the end of the trip we were laughing about it. Many of us (including me) fell into thorn bushes, ditches and streams. At the camp we had many cooking disasters and we got to the point where everything was hilarious. Whilst on the walk everyone agreed that they would love to go home but when we got back to school most people agreed that they had fun and would want to do it again. I would recommend DofE to everyone. Don’t let your liver condition put you off. It is a massive achievement and has made me feel much more confident with my condition.

 

 

 

 

Kate and her family have been through a tough couple of years as her son was diagnosed with three serious conditions in succession. Here she shares her story and explains how she copes with the stresses her situation brings.

 

Our son Max was 12 when he was diagnosed with autoimmune hepatitis. It came as a huge shock to us and to him. From noticing him having yellowing of the eyes to suddenly being a very sick child was so rapid and just something we found so hard to digest. It turned life as we know it upside down and when you first get a diagnosis like this there are so many ifs, buts and maybes that make your mind spiral into some really dark places. Max had obviously been ill for a while and we hadn’t realised. When we look back now you could see the possible signs that he was unwell.  But the symptoms were so subtle that we or a GP would probably have not worried about them. Both my husband and I have struggled with the guilt and regrets of not knowing and not getting him help earlier. Hindsight is great thing and we both struggled with the idea that if we’d known what this was earlier, maybe Max wouldn’t have been so sick. As parents, the rollercoaster of emotions is a brutal journey to ride.

Within a month of this diagnosis, Max was also diagnosed with primary sclerosing cholangitis Another really serious condition which felt like another huge blow. There seemed to be nothing positive in this whole process and trying to keep a child newly diagnosed with these conditions happy and optimistic was extremely challenging. You are battling with your own fears, sadness, anger and ‘why us?’ and then trying to balance being hopeful and uplifting to your child who is going through it all.

It took a long time to get Max stable with his liver condition. It was tough getting the phone calls that Max needed more and more medication. Your mind runs wild with you and you develop a permanent anxious knot in your tummy that doesn’t go away. He suffered with massive weight gain and severe acne from the steroids which really affected his mental wellbeing. When he returned to school he was taunted about being off for so long. Other kids just made up reasons why he’d been off – brain tumours, transplant, heart attack – and those that had limited knowledge said he’d been an alcoholic or had a drug problem. He never corrected anyone or shared why he’d been off but he knew he was carrying the stigma of liver disease. Sending him to school felt like sending him to the lion’s den but he was able to remain strong and appear to wash off the comments and jibes. At home though he would be upset by it and it was heartbreaking to think my then 13 year old was having to put on the fight of his life both medically, socially and emotionally.

 

Shortly after receiving the first two diagnoses, Max starting experiencing bowel problems and it took us a further eighteen months to get a diagnosis of IBD. This was a very arduous and stressful journey, begging hospitals for appointments to get Max some help. Without pushy parents this system would fail these children enormously. He was finally diagnosed in October 2023 and was immediately put on medication. While as parents we were relieved to get an answer, I would say that for Max this diagnosis was the hardest and he has struggled since to come to terms with it. It has really affected his moods and emotional state, he’s either hyper or incredibly low. It has affected his school work and is starting to affect his social circles to. So, although for the first time since diagnosis his liver, bile ducts and IBD are stable, he is really suffering with his mental well being. With the support he has been offered and pulling together as a family I know that Max will be able to find his strong, determined and humorous self again. For all of us this is a journey and a process and we always try to live for the day we are in and be grateful for each new milestone reached.

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.