My liver disease didn

My liver disease didn 't stop me...from helping others

by Maisie

Twenty-three year old Maisie has chronic liver disease and portal hypertension. She is a big believer in using her own experience to help others, as she explains.

I was fortunate in that my liver condition didn’t affect me hugely growing up, apart from sometimes missing school to attend appointments. I’ve never had to spend long spells in hospital. After school I attended Sheppey College in Sheerness for four years where I did courses in ICT, business, and health and social care. The staff there were really supportive and encouraging. In fact, I still keep in touch with some of them who were particularly helpful to me. After college, I was put in touch with Kent Supported Employment who help people who have health issues get into work. I have a mentor called Kate who is brilliant and gives me advice on things like CV writing and applying for jobs. With her help, I got a job with Kent Community Health, which is part of the NHS. I was a part of a panel to help in recruitment of people with learning disabilities. I have mild learning disabilities myself so felt well placed to speak on this issue. I would look at documents and advise how they could be improved to make them more accessible. When that contract came to an end, I had to start looking again and I’m delighted to have got a new job. ’I m still with Kent Community Health, this time as a facilities operative at Faversham Hospital. I’ll be helping to deliver meals, doing cleaning, in fact anything to assist the medical staff in the running of the hospital. I love meeting new people so I’m really looking forward to starting this job. I first found out about CLDF when I met their young people’s officer at one of my hospital appointments and I thought it would be good to meet other young people who live with liver disease. I like joining in the Zoom calls and being in touch with people on Hive. This was particularly helpful during lockdown which I did find tough. I’m lucky that I didn’t have to shield but it was so boring. I filled my time by online learning. I did a business course run by the Prince’s Trust and a peer leader course to help support people with learning disabilities. I feel that at least now I have acquired extra skills which will be of use in my current and future roles. Health wise, I have been lucky. I go to Kings every six months for a check-up and I love the doctors there. I know that some young people worry about moving to adult services but really there is no need. Just remember that these people are doctors. There’s nothing you can say to them that they haven’t heard before so don’t worry about transition. Use your appointments to talk to the doctors and ask your questions.

My motto has always been keep going and keep smiling. Sometimes things don’t go exactly as you hoped but if you stay positive and keep trying you will get there!

Insight from Italy during the COVID 19 pandemic

COVID-19 is the fifth documented pandemic since the flu in 1918. It has taken lives, impacted our work and social lives as well as our mental and physical health. There was very little known about this virus, how it spreads and its effect on different populations. Following the outbreak in China, Italy became one of the hardest hit areas. Papa Giovanni XXIII Hospital, in Bergamo hosts the main paediatric hepatology and liver transplantation centre of Italy. Dr Lorenzo D'Antiga, Director of Child Health, was one of the first professionals to research and share learning with colleagues across the world about the effects of COVID-19 in children with a liver disease including those on immunosuppressant therapies and post-transplant.

Many liver centres and families worldwide raised the concern that immunocompromised patients may be at high risk of COVID-19. Dr Lorenzo D’Antiga shared that, unlike common viral agents (such as adenovirus, rhinovirus, norovirus, influenza, and respiratory syncytial virus), coronaviruses have not been shown to cause a more severe disease in immunosuppressed patients. He also shared what the risk factors were e.g. age and co-morbidities such as obesity, heart disease, lung disease.

The experience so far on coronavirus outbreaks suggest that immunosuppressed patients are not at an increased risk of severe complications compared with the general population, both in children and adults. The development of vaccines has provided further insurance. “I would like to thank the Children’s Liver Disease Foundation for the support given to families of children with liver disease over the last 40 years, and particularly during last year when we faced unprecedented challenges, due to the COVID-19 pandemic” said Dr D’Antiga. “The Foundation is a great example of how the partnership between different stakeholders (patients, families, health care personnel, volunteers, the public) can make the difference and provide a holistic care to children with liver disease. ”

CLDF Chief Executive, Alison Taylor, commented:

“As a patient organisation, Children’s Liver Disease Foundation would like to say a huge thank you to Dr Lorenzo D’Antiga and teams in Italy for the insight provided at such a crucial and uncertain time in the first few months of the pandemic. This allowed both professionals and patient organisations to provide more effective guidance and advice to anxious families and young people in the UK and beyond. It is a testament to collaborative working and knowledge sharing to best support patients who are at the centre of all our work. ”

Information you can trust

There are many different childhood liver diseases, all of them rare and many very complex. Obtaining the facts about your child’s condition, for yourself and to help explain to family, is important. CLDF provides a comprehensive series of literature on a wide range of childhood liver conditions, all of which has been produced in conjunction with medical experts. In addition to leaflets on specific conditions, their symptoms and treatment, we have information on diagnostic tests and transplant as well as general information about the liver. All of our literature is produced to rigorous standards and reviewed every two years. It means that our families can be assured the information they receive is up to date and of the highest quality. You can find all our information about the liver and specific liver conditions at https://childliverdisease.org/liver-information/

If, however, you would prefer any leaflets to be posted out to you please contact us at irhm@childliverdisease.org.