We are deeply saddened by the passing of Dr Ahmed Elsharkawy, a dedicated trustee of the British Liver Trust and a passionate advocate for people affected by liver disease.

The post A tribute to Dr Ahmed Elsharkawy appeared first on British Liver Trust.

Here, he explains the concept of ‘Social Legacy’ and the positive, measurable and impactful change you are able and willing to help create for the individuals, communities and charitable causes and organisations close to your heart.

“What does ‘Social Legacy’ mean to you and are you currently as engaged with your own as you would like to be? You may not have heard this term before, but a Social Legacy is a fundamental component of the Legacy you are creating every day and will one day leave behind. 

A Social Legacy is the lasting positive impact, values, practices, and relationships you leave behind for future generations. It can be based on your attitudes and approaches to the causes you support, capturing your desire to help others and make a positive difference. A Social Legacy not only consists of the donations you have made to charity, but also the other ways you have supported causes in which you believe, like sharing your story, fundraising, or volunteering. It can reflect the things you have done, or your plans for the future – like leaving a gift in your will.  

While we often feel reluctant to consider or identify ourselves as particularly ‘wealthy’, wealth is more than a monetary amount. True wealth consists of both our emotional as well as our financial wealth, encompassing the lessons we have learnt, the successes we have enjoyed and the experiences we have shared throughout our life. It is for this same reason that when we come to identify our ‘assets’, we are often surprised at how ‘wealthy’ we realise we are. 

Your passions, values, and beliefs will fundamentally drive your Social Legacy. For many, the personal connection driving your Social Legacy is a family member or a friend who has been affected by a particular health related issue, or the support you have received yourself. Your Social Legacy should absolutely reflect what is important to you and can be linked to a charity close to your heart. 

Here at Hereditas, we are proud to be supporting the British Liver Trust, to promote and develop our mutual understanding of Social Legacy and the immeasurable benefit that Legacy Planning brings to our charitable giving journey. Together, we believe that Legacy Planning is about learning from the past, living in the present, and building for the future. 

Everyone is entitled to leave a meaningful and lasting legacy, regardless of the amount of their financial wealth, and our vision is a world where Legacy Planning is not a luxury but the norm. Hereditas believe that ultimately, our strength lies in what we give and not what we take and that a true legacy isn’t what we leave behind, but what we set in motion. 

We will all leave behind a legacy of some kind, whether we intend to or not and by engaging actively and thoughtfully in the creation and development of our Social Legacy, we can make our legacy both meaningful and lasting for generations to come.” 

Hereditas have a new Legacy Planning Questionnaire, which is located on their website. It only takes 5-10 minutes to complete following which you will receive a detailed and personalised report based on your response and at no cost, highlighting exactly where you are in your Legacy Planning journey. 

If you would like to find out more about ways you can support the British Liver Trust, and create your own legacy, you can find information here. 

You can find out more about leaving a gift in your will here.

To find out more about Hereditas and to complete the questionnaire please visit www.hereditas.co.uk 

This blog has been provided by Andrew Dodson and reflects his personal views. 

The British Liver Trust recommends you seek professional advice when making or updating your will. 

The post What does ‘Social Legacy’ mean to you? appeared first on British Liver Trust.

“Back in 2022, I became really unwell,” says Stephanie, 38, who lives in Beith. “A virus caused my immune system to attack my liver. Doctors told me that my liver markers in my blood should be about 50 and mine were up over 3000! I was diagnosed with acute viral hepatitis and was being considered for a liver transplant. 

“Thankfully, this was not necessary because the treatment I received at Crosshouse Hospital in Kilmarnock worked, but this health scare really highlighted to me how important our livers are and how I wasn’t looking after myself.  

 “When I got out of hospital, I was straight onto the British Liver Trust website and did lots of research. Reading people’s stories and seeing how they used a health scare to turn their lives around was really inspirational to me. 

  “I decided to make some changes. I’ve cut down on processed food, have lost over two stone to get myself down to a healthy weight and am now a very active person, and I don’t drink alcohol at all. I have sadly been left with a few complications, but nothing that I will complain about because for the most part, I live an extremely normal and healthy life! 

  “I’m actually now grateful that it happened because I am now the healthiest version of myself. I’m a district manager for Slimming World and I try very hard to highlight as often as I can, that following a healthy diet of whole foods, unprocessed and being active, is the best way a human can look after their liver and in fact their whole body. 

“When I had my liver scanned two years ago, I was told it was a very healthy liver, which was music to my ears.   

 “I’ll do anything I can to support the British Liver Trust. Lots of people don’t really think about their liver health, and I used to be one of them. I didn’t realise how important it was, until mine wasn’t working!  

 “So I’m excited about doing the Supernova Kelpies, it looks like a beautiful event, and I’m also training for a 10K in September. Both events will help raise funds and awareness for the British Liver Trust which is something I’m passionate about.”  

  Dan Painter Public Fundraising Manager at British Liver Trust commented: “As a charity, we are leading the fight against liver disease and liver cancer. We reach over two million people each year; providing information and support to patients and families and providing vital advice to help people improve their liver health. But there is still so much to be done. Liver disease is the only major disease in the UK where death rates are rising, and we want to change that. We’re so grateful to Stephanie for taking on these runs for us and hope that the Supernova Kelpies proves a memorable experience!” 

 You can support Stephanie’s Supernova Kelpies run here   Stephanie Caira is fundraising for British Liver Trust 

The post Life-changing health scare prompts Stephanie to spread the word appeared first on British Liver Trust.

“I had always liked the idea of climbing Snowdon but wanted it to be attached to a good cause. So, when I saw that the British Liver Trust was organising a Snowdon hike, I jumped at the opportunity! I was born with chronic hepatitis B, and I liked the idea that I was doing this for myself and for anyone suffering from liver disease. 

“Although I enjoy walking, I had never taken on anything as extreme as Snowdon before. I trained by joining group hikes to Box Hill and just walking around National Trust parks to increase my walking endurance three weeks prior to the Snowdon hike.  

“As far as fundraising is concerned, because I have personal experience of liver disease, I shared my story on my fundraising page and was overwhelmed by the support I received – it was brilliant to beat my expected fundraising target! 

“When it came to the big day, I would say that the hike was tougher than I expected, mainly due to the weather conditions on that day. While it was nice and sunny in England, it was windy and raining in Wales which made the hike even more challenging. However, since this was for a good cause, we were all able to push through the unfavourable weather to reach the top. The group were a very friendly bunch, and the hiking guides were very careful to pace us, so we had ample time to rest and continue the hike until we reached the top.  

“I did have aching legs for about a week after the hike, but it was completely worth it! When you can achieve something on behalf of a cause it gives you a real sense of fulfilment that you have done something that goes beyond yourself. I would certainly encourage anyone who is thinking of doing something similar to go for it! It is an amazing and memorable experience, and you will meet so many lovely people along the way.  The hikes are very well organised, and you have absolutely nothing to worry about.” 

If you’d like to be part of an organised hike like Abdul, check out details of this summer’s Yorkshire Three Peaks challenge here  . 

The post So glad I took on Best Foot Forward! appeared first on British Liver Trust.

Many people living with rare liver disease report experiencing stigma or feel dismissed because of misconceptions about liver conditions. These experiences, combined with gaps in professional and public understanding, contribute to inequities in treatment and outcomes.

We’d love everyone affected by a rare liver disease to join in our new campaign No One Left Behind. To make it easy to join in, we have prepared a toolkit for social media. 

Our No One Left Behind campaign is aimed at:

• raising public and professional awareness of rare liver diseases
• highlighting the lived experience of patients and families
• promoting earlier diagnosis and access to specialist care
• calling for greater investment in research and innovation.

Because rare should never mean forgotten.

With thanks to Ipsen for their sponsorship of this activity.

The post No One Left Behind appeared first on British Liver Trust.

In the summer of 2024, I started feeling more tired than usual. I didn’t have any other symptoms at first, so I put it down to the stress of buying my first house, but then my mum noticed I was napping as much as my two-year-old niece.

My GP surgery ordered blood tests after which a request appeared on my NHS app for further tests because the results were ‘borderline abnormal’. By now the tiredness had turned into fatigue and I’d be in tears at times because I just couldn’t function properly. I called the surgery and the GP I spoke to said it was just my ‘moods’, but eventually agreed to more blood tests and a liver function test. The LFT was 666, when the normal range should be 30-130 and I was immediately referred to the hospital.

My hepatologist explained what the blood tests meant and said they’d try all the non-invasive tests first to rule out more common conditions. Over the next few months I had countless blood tests, a liver ultrasound, a biopsy, and two MRIs.

The biopsy ruled out autoimmune hepatitis, so then it was potentially PBC or PSC. The MRI showed a narrowing in my bile ducts, but there was also dilation which is very unusual. My consultant put me on ursodeoxycholic acid capsules, but I found them difficult to swallow and dreaded taking them. I’d never been ill before in my life so to suddenly have so many appointments and tests was quite overwhelming. Some days I would be my normal energetic self and then the next day I didn’t even have the energy to get out of bed. I wondered if I’d ever feel normal again!

I found the British Liver Trust as a link from an NHS site because I only go on trusted websites. Along my diagnosis journey when lots of autoimmune conditions were suspected, I basically lived on the British Liver Trust website researching what everything was! When my hepatologist suspected PSC, he gave me a leaflet produced by the British Liver Trust and there’s no other trusted source of information on Caroli disease, so it’s been the only place I refer back to.

Liver resection

I was referred to the surgical team at Leeds at the end of November 2024 and my surgery date was 8th January 2025 where they would remove sections two and three of my liver. They suspected it was Caroli disease, but I wouldn’t get a diagnosis until after surgery.

I was put on a protein diet, had to practice my breathing using a spirometer and keep myself as fit as possible (easier said than done over Christmas). But I stayed positive because I knew there was something I could do now to help myself and feel more in control.

I was surprisingly calm about the surgery, which ended up being a bigger operation than originally planned. I was warned they may have to take more of my liver away and I had about a third removed. I had robotic keyhole surgery and then a large cut to remove the section of liver. I had tubes coming out of everywhere – a catheter, two or three cannulas, two wound catheters, a drain and then other wires and the tube in my nose. I could press a button for pain relief if I needed it so there wasn’t much pain, but the meds made me feel woozy and it almost felt like it was happening to someone else.

The ICU staff were so supportive and kind. They helped me get out of the bed to sit in a chair, reassured my mum and more besides. I was moved to the ward after a few days and discharged a couple of days after that.

Two months after my surgery the surgeon confirmed it was Caroli disease with no underlying autoimmune condition. I was elated as it meant that surgery should have solved the problem and I didn’t have to be on medication anymore.

Recovering at home felt harder because I didn’t have a nurse there all the time. My mum helped me with the blood thinning injections and I was taking laxatives because of the pain killers I was prescribed. We found ingenious ways of doing things like showering with a bin bag to keep my wound dry and using books as steps to help me into bed. I decided to keep a recovery journal to track all the little wins every day and it helped me recognise how big of an achievement simply having a bowel movement or getting out of bed by myself was at the time. I could see the progress quite quickly in the early days until things started to feel like a new normal or went back to normal completely. Now my scars are certainly looking better but I’m still getting used to them!

Two months after my surgery the surgeon confirmed it was Caroli disease with no underlying autoimmune condition. I was elated as it meant that surgery should have solved the problem and I didn’t have to be on medication anymore.

Unfortunately, a follow-up MRI scan revealed my bile ducts were now dilated at the other side of my liver. It was a rollercoaster summer, waiting for another scan and more appointments. I psyched myself up for more surgery but was instead referred back to hepatology in autumn. There’s a question mark over whether I might have PSC or more Caroli disease – my consultant suspects Caroli and they’ll do regular scans with the possibility of more surgery depending on the results.

It’s crazy to think how much has happened in just over a year and I’m trying to view this next chapter as a new challenge to overcome. But recovery is a journey and everything takes time, you’ve just got to be kind to yourself along the way.

I work full time which has definitely been challenging when dealing with the fatigue. It’s better than before the surgery, but it’s difficult dealing with the bad days and trying to accept a different way of doing things just to get through each week. My employer is very supportive and was fantastic when I was off work for my surgery. However, it’s hard explaining to people that some days I’m perfectly fine and the next I’m too tired to work. I work hybrid and often find myself napping in my lunch break when I’m working from home, or sometimes I fall asleep at my desk! Other days my tiredness levels may be OK, but I struggle with brain fog or being unable to concentrate. I’m trying to find ways of managing it but it’s not easy.

Meeting other Caroli patients

With a rare condition, you can feel like you’re getting passed from place to place and no one quite knows what to do with you. You’ve got to fight for yourself and keep chasing for appointments or scans and go to your appointments armed with as much knowledge as possible so you can have honest conversations about next steps.

I’ve contacted the British Liver Trust’s Nurse-led Helpline a few times to provide some clarity on my situation and they’ve offered great advice about what questions to ask at my appointments. Just having someone you can talk to who understands and who knows about medical environments can be extremely useful. I have attended the online support groups too, including a wellbeing session.

I’m always talking to people about my diagnosis as it helps them understand, and me to process my situation. The Health Unlocked forum can also be great to connect with people going through something similar. Unfortunately, I’ve yet to connect with anyone with Caroli disease but hopefully one day I’ll meet someone I can swap stories with!

The post Rachael’s story: The British Liver Trust’s Nurse-led Helpline has offered me great advice. Having someone who knows about medical environments is extremely useful” appeared first on British Liver Trust.

The Government has brought new rules into force to limit the advertising of less healthy food and drink. This is a welcome and long-overdue step to protect children from being constantly exposed to junk food advertising, particularly online and on television. The legislation aims to reduce the harmful impact of junk food on public health and to help tackle the obesity crisis, with around two-thirds of people in the UK currently living with overweight or obesity.

Pamela Healy OBE, Chief Executive of the British Liver Trust:

 “Bringing the Less Healthy Food and Drink Advertising Regulations into force marks a watershed moment for child health and a long-overdue step towards tackling overweight and obesity driven by the relentless promotion of unhealthy food and drink. The British Liver Trust is proud to have campaigned alongside other health charities to ensure that these new rules are put in place.

These new advertising restrictions will support better population health and help reduce rates of MASLD or metabolic dysfunction-associated steatotic liver disease (previously called NAFLD or fatty liver disease).  Up to one in five people are affected with MASLD and around 12% of these, more than one million people in the UK, live with its more severe form, MASH. This is a leading cause of serious liver damage and can lead to liver cancer or a liver transplant.

The introduction of this legislation, alongside other measures in the 10 Year Health Plan, begins to put in place the policies needed to reduce the downstream impacts of poor population health on NHS services.”

Advertising has a powerful influence on what children want to eat. Reducing the promotion of foods high in fat, sugar and salt can support healthier choices from an early age and help prevent long-term health problems.

These restrictions are also important in addressing the rise in fatty liver disease, known as MASLD (metabolic dysfunction-associated steatotic liver disease). MASLD is now recognised as a major driver of serious liver damage, affecting up to one in five people. Around 12% of those,  more than one million people, are living with the more severe form, MASH (metabolic dysfunction-associated steatohepatitis). Overweight and obesity are key drivers of this disease.

The burden of MASLD and obesity is not shared equally. New data from the Office for Health Improvement and Disparities shows that premature deaths from fatty liver disease are now 6.4 times higher in the most deprived areas of England compared to the most affluent.

While the introduction of these restrictions is a positive step, further progress is needed. This includes:

1. Adopting the 2018 Nutrient Profiling Model, as set out in the 10 Year Health Plan
2. Axpanding the range of products covered by the rules
3. Removing exemptions for brand advertising
4. beginning work on the next phase of advertising regulation, including outdoor and other media channels

Stronger action will help create healthier environments for everyone, reduce health inequalities, and ease long-term pressure on the NHS.

DoH: Landmark junk food ad ban to protect kid’s health – GOV.UK

The post The British Liver Trust Welcomes New Junk Food Advertising Restrictions – A Watershed Moment for Preventative Public Health appeared first on British Liver Trust.

We all need a small amount of copper in our bodies. We usually get more than we need from our food. The liver gets rid of all the extra copper that we do not need.

In Wilson’s disease, a problem with a gene means that the liver cannot get rid of the extra copper. So the copper builds up in the liver and causes damage. Over time, this copper overload can also affect the brain and cause problems there.

On this page you can find out more about what typically happens to copper in the body. And what is different in Wilson’s disease.

On this page:

• Why does my body need copper?
• What normally happens to the copper?
• What is different in Wilson’s disease?
• What problems can copper build up cause?

The post What causes Wilson’s disease? appeared first on British Liver Trust.

When I was just eight years old I was taken to A&E because I was passing blood in my bowel movements. I was diagnosed with ulcerative colitis and autoimmune hepatitis, and was very lucky not be physically affected by it – except for the hospital visits, I lived my life the same as anyone else. My doctors said I was a quite a rare case and my consultant even did lectures and presentations about me at university. I’m now 30 and it’s still unknown why I have it when no one else in the family does.

Because I was so young when I was diagnosed I didn’t really understand autoimmune hepatitis and because I didn’t have symptoms, I thought I didn’t need my medication. From the age of 12/13 I started taking it as and when and would flush the rest down the toilet. At 16/17 I decided I was mature enough to deal with it on my own and went to hospital appointments without my parents. I also started drinking with friends. How very wrong and naïve I was.

My consultant tried to tell me what would happen if I didn’t take my meds. He took me to the liver ward and walked me round people who were severely poorly, but it didn’t make a difference. I thought it would never happen to me, but then I was diagnosed with cirrhosis of the liver (micronodular) and was placed on heavy steroids and immunosuppression. I didn’t like the feeling of being hungry all the time and the weight gain which the steroids caused, but I did take my meds most of the time as my parents would watch me every morning and started offering rewards, such as presents, for taking them too.

Blunt consultant

When I was transferred to the adult clinic my new consultant was as blunt as possible, saying it was more dangerous for me to take my medication as and when than not at all, so he took my tablets away completely. Eventually it started to click that I should take them, but I don’t think my consultant was comfortable enough to allow me to do that. Plus, I wasn’t getting more scarring on the liver, so my body was maintaining itself.

Fast forward to my mid-20s and I had also accumulated non-alcohol related fatty liver disease, caused by the increased appetite from the steroids. Because I also had irritable bowel syndrome, I was referred to a dietician who placed me on a low Fodmap diet and advised me to go lactose free so we could find out what foods triggered it. Everything had to be cooked from scratch and I lost six stone and after seven years of trying to conceive, I fell pregnant. I gained three stone during the pregnancy, but the good news was that my bloods were within perfect normal range. After I had my son, I lost 1.5 stone, but then my results started to creep back up again.

Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

Just after my son’s first birthday I became pregnant again and had the same weight gain and perfect bloods during the pregnancy, with weight loss after the birth and results creeping back up.

Over the years I have had flare-ups but remain off medications. My sons are now two years old and six months old and my spleen remains enlarged (it went back down after my first pregnancy), my fatty liver remains and my AIH is very much active. Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.

I am currently waiting to hear if I will go back on medication for the AIH. I have been very clear I do not want steroids because of the weight gain, but I will take the immunosuppression which takes longer to kick in.

Body in ruins

I find it hard because a lot of people, including my family, don’t know what it’s like for me or what having autoimmune hepatitis really means. Not once as a mature adult have I been asked about any therapy so I can talk about how I feel.

When you’re a child yourself you don’t realise what’s going on but looking back, I do regret a lot of it. My body is in ruins and I’m only 30. If only I had taken my condition seriously when I was younger, I might not be in this situation. Now I have children of my own I’m committed to being better because I want to be around for them. I worry that I may have passed the AIH down to them, but they can’t be tested for it until they’re older.

If you’re diagnosed with liver disease, stay strong and remember it’s about how you treat yourself and your body that impacts your life later down the line.

The post Nadia’s story: “My consultant tried to tell me what would happen if I didn’t take my meds, but I thought it wouldn’t happen to me” appeared first on British Liver Trust.

If your pregnancy care team think you could have acute fatty liver of pregnancy, they will do tests quickly to find out for sure. It is important to diagnose and treat acute fatty liver of pregnancy as soon as possible.

On this page: 

• Symptoms of acute fatty liver of pregnancy
• Tests for acute fatty liver of pregnancy

The post Symptoms and diagnosis for acute fatty liver of pregnancy appeared first on British Liver Trust.