Welcome to our first journal/blog, the space for sharing non-medical advice and information, up-to-date research findings on liver disease and transplants, motivational conversations, news and events updates, fundraising opportunities and our future plans, selfcare tips and so much more… Let’s begin with introductions. You know us, the committee, from this website - Meet the Team – let us introduce you to YOU, LISN members...

Since our inception in April 2024, we have been welcoming members from all over Ireland, most of whom found out about us at St. Vincent’s University Hospital Liver Outpatients Clinic. Members include those who have liver disease, those who have received liver transplants, those awaiting transplants – and your carers, partners and families. Right now, our members range from 27 to 78 years old, with an average age of 56. Of these, two members have been transplanted for over 30 years! Two individuals received transplants 20 years ago and, by far, those who had transplants in 2022 make up the largest proportion of our members, followed by those transplanted in 2023 and 2017. A total number of 10 members have had two or more liver transplants. Finally, carers, family members and partners currently total 22 members.

We have examined the illnesses / diseases which our members are living with or have been responsible for liver failure among us, and strive to focus, in terms of provision of information, practical and educational, on all of these diseases. With time and a growing membership, this information will be supplemented to meet the needs of each one of our members, and, of course, non-members!

The following chart, compiled from data on our members, shows that the most common illness responsible for liver failure and subsequent liver transplant is PSC or primary sclerosing cholangitis, affecting 34% of our members. Second most common illness among our members is PBC or primary biliary cholangitis (15%), followed by a compilation of rare diseases (11%) and autoimmune hepatitis (10%).

Rare diseases include Alagille syndrome, carcinoid tumours, Budd Chiari syndrome and biliary atresia, and their incidences are shown in more detail in the following pie chart.

 

Uncommon or rare diseases, affecting 11% of our members, are collated in the chart above, highlighting that the incidence of each of these illnesses is comparable within our cohort.

We are looking forward to meeting you all as time goes on. In the interim, get your nature fix!! On average, people are significantly and substantially happier outdoors in all green or natural habitat types (particularly coastal environments!) than they are in urban settings! Raingear and a woolly hat may be a prerequisite this summer! 😉