I feel there is a lot of stigma around liver conditions and the assumption that they must be linked to alcohol. I think a lot of this comes from a lack of awareness about the vast range of conditions and not talking about them enough with our friends, family and within our communities. Regardless of what a person’s liver condition is, or any condition it is linked to, we should support and help all without judgment and bias, which is a principle I try and live my life by, driven by my Sikh beliefs. Through talking more, we can build understanding and awareness, and play a part in doing away with any stigma and turn the focus towards supporting and helping people. Being a Sikh of South Asian heritage and someone with a liver condition and other autoimmune diseases, I feel passionate about playing my part in sharing my story.
I have a liver condition called Autoimmune Hepatitis. My autoimmune journey does not start here though, it started in 2014 when I was diagnosed with Sjogren’s Syndrome. Sjogren’s is a disorder where your immune system attacks your tear, salivary and sweat glands, leading to dry eyes, mouth and skin, as well as tiredness, joint pain, swelling between the nose and ears and rashes. Then in 2020 November I was diagnosed with Lupus SLE. I had noticed that I had been feeling unwell with a lack of energy and concentration. My body felt like it ached continuously and I often had a rash across my face. I was put on a medication called Mycophenolate to manage my condition and I had biweekly appointments and monthly blood test to monitor its effects.
In May 2022, after a few months of feeling more myself, I noticed I had started to feel tired again, and then after my regular Lupus blood test, I had a call from the hospital that showed my LFT was slightly raised at 80 and so were my AST levels. I was told by my nurse to continue as normal and to repeat bloods in two weeks’ time. I didn’t worry too much about this as the medication can cause slight elevations in bloods but then settle. My next blood levels were in the 100s, so I was told to stop my medication with the expectation that things would normalize and my medication would be adjusted. Unfortunately, this did not happen and my next bloods showed my levels going up into 300s and then two weeks later into the 400s. This time, I was referred to hepatology and to have a scan of my liver, to see was going on. I started to feel really unwell as the weeks went on.
In particular, I remember going for bloods in late June at 8am and then having a call from my GP at 4pm that afternoon asking me how I was, because my levels were very elevated, with my LFT (791) and AST (529) Bilirubin 27. By this point, I could not concentrate at all at work. I felt very weak and was falling asleep in meetings. At some stages, I even felt like I was blacking out. The exhaustion was beyond anything I had ever experienced. No amount of sleep or rest could shake it off and my urine was bright orange. My GP had told me to go to A&E if I showed any signs of jaundice and asked for my referral to hepatology to be urgent. That week, constantly asked my husband: “Am I yellow? I feel like I am going yellow.” I was terrified because I did not know what was happening to me. I kept thinking the worst and Googling it, which probably didn’t help because it came up with all sorts.
I wondered if I had liver failure, but I did not drink or smoke
I had my scan and hepatology appointments scheduled for the first week of July. I wondered if I had liver failure, but I did not drink or smoke. I had also lost weight and was looking after my health better than I’d ever had, so didn’t understand why this was happening. My GP had mentioned Autoimmune Hepatitis and at my hepatology appointment this would be explored due to my other autoimmune conditions. Finally, the day of scan came, followed by my hepatology appointment. I remember my heart was beating extremely fast in the waiting room. By this point I had started reading up on autoimmune hepatitis and looking at the worst-case scenarios.
The consultant was fantastic, he went through my last few months of blood tests and scans with extreme focus and explanation. I remember him saying your liver is inflamed but it is still functioning. Given all the tests, I think you have Autoimmune Hepatitis. He suggested I start a dose of steroids, Prednisolone, to bring things under control and weekly blood tests and telephone consultations with him to see how I was doing. Walking out of that appointment, the relief I felt that I now had a plan was overwhelming, I had felt lost and scared before that.
When I went home, the first thing I did was go onto the British Liver Trust’s website to find out more about Autoimmune Hepatitis. For me, understanding and gaining knowledge allows me to gain control and helps provide comfort and take the fear away. I feel like if you are an intelligent patient, then you can then go to your appointments, ask the right questions, and help yourself to manage your condition. It is important to know the warning signs because time is of the essence. The more the liver is damaged, the harder it is for it to come out of that damaged state and hence lasting effects. After three weeks of taking the Prednisolone, my levels had returned to normal, and my consultant had verified his diagnosis of Autoimmune Hepatitis. My care and my consultant have been fantastic, any questions that I have had, he has phoned me back straight away.
I think to myself, if I had not been monitored because of my Lupus and medication, Autoimmune Hepatitis may not have been pick up so quickly and my story could have been quite different. I am feeling so much better now that I am on Prednisolone, the difference is crazy. I can run around with my son, and I have energy and my liver has now recovered because of the early diagnosis. I am being monitored by bloods with my hepatologist and rheumatologist and I am about to start Azathioprine which has been recommended by my hepatologist and OK-ed by my rheumatologist to manage all my autoimmune diseases.
It is early days, so we will see how things go, but I am so grateful for the level of care I have received at my local NHS and the continuous monitoring and support to manage my condition. I do still have tired days if I overdo it and do not take the appropriate rest. Fatigue is one of the biggest symptoms of autoimmune conditions so you’ve got to be sensible and know your limits. I’m now looking to the future and feel I can live my life. I understand more about the condition and have joined an online support group which has been of utmost support to me.
If you have a liver condition and are feeling unwell, pick up the phone to your consultant
The one thing I would say to people with a liver condition is that, once you are aware, you must be proactive and your health is in your own hands too. I know the warning signs now, who to contact and what I have to do. If you are feeling unwell, don’t sit on it, pick up the phone to your consultant / Hepatology Unit. People need their families and friends to understand too. I am lucky because my husband, immediate family, friends, and my parents in particular; have been excellent in supporting me. My mum has been educating herself about autoimmune conditions and has had conversations with a family friend whose children have autoimmune conditions too. Work have been great in supporting any reasonable adjustments and understanding my condition.
According to the British Liver Trust website, ‘Autoimmune Hepatitis is uncommon. It is estimated to affect between 10 and 17 people per 100,000 in Europe. This means it is likely that there are approximately 10,000 people living with AIH in the UK.’ Being uncommon, Autoimmune Hepatitis is not well known or readily talked about, so it is important to raise awareness of it. We need to talk about it more in our communities and I try and do this with people in the South Asian community too to help raise awareness. Liver conditions are not always linked to alcohol and the word hepatitis means inflamed liver.
My final message I would like to finish with is, we should be supporting anyone who needs it, not stigmatizing them. People will not get the help they need unless you drive away that stigma because it stops them coming forward. And if you want to look at it in terms of money, the quicker we get people the help they need, the less money it will cost the NHS. I say less judgment more support. The more that we put stories out there about people living with liver diseases, the more everyone will be educated and able to help those in their own communities deal with it. This is why as a British Sikh Women I have shared my story in the hope that it will help others inside and outside of my community talk about these types of conditions more. I always tell people around me about my conditions and raise awareness through conversations and sharing social media posts to get the word out there. If we do not start talking about it, we will never understand it, so let’s start talking more!