About Liver AVMs

Liver AVMs symptoms occur in about 8% of the patients with HHT. Symptoms appear around the age of 30 and occur predominantly in females. The three most common initial clinical presentations  are Portal hypertension (pressure on the major vein that leads to the liver), Biliary disease (bile cysts), and Heart failure according to J Hepatol. 2007 the their review paper on Liver involvement in HHT

Liver VMs are most often asymptomatic but can result in heart failure and other complications. Echocardiogram is recommended at the time of liver VM diagnosis.

Patients with symptomatic liver VMs should be managed by an expert team at an HHT Centre, with at least annual follow-up. Liver biopsy should be avoided in patients with definite or suspected VMs. Hepatic artery embolisation should be avoided in patients with liver VMs. MRI and CT scan findings of Liver VMs are often confused with cirrhosis when viewed by physicians who may not have expertise in HHT.

Please read our Guide to HHT & The Liver, which has been approved by Prof Adrian Brady, National HHT Centre, Mercy University Hospital, Cork.

World Liver Day 2023 –  Susan , an HHT patient who lives with the challenges of Liver VMs daily, talks to us about the challenges she faces. Thank you Susan for taking the time today to talk to us about your experience of living with HHT in the Liver. Susan’s Story | Living with HHT

By working together we can find effective solutions to improve HHT patients in their daily lives.

Your life story is valuable in making a difference, the more we talk about it, the more we can change things.

TOGETHER WE HAVE THE POWER TO CHANGE THINGS

You can send us your story to info@hhtireland.org