Familial Chylomicronaemia Syndrome (FCS) severely affects the body's ability to process dietary fat. Though rare (1-2 individuals per million globally), recent estimates indicate a potentially wider impact (1:100,000 to 1:1,000,000) due to underdiagnosis. Managing FCS requires strict adherence to dietary guidelines: a fat intake of over 20g, limited simple sugars, and no alcohol. Non-compliance heightens the risk of severe abdominal pain and life-threatening pancreatitis for affected individuals.
The webinar provided valuable insights and practical solutions for managing FCS-related dietary challenges. It was led by Jill Prawer, Rare Diseases Project Manager at FH Europe Foundation, aiming to increase awareness and understanding of the difficulties individuals face adhering to the FCS diet.
The webinar featured expert perspectives:
You can download the recipes here.
The comprehensive discussion encompassed not only the intricacies of FCS but also included insights relevant to those living with homozygous FH (HoFH), who also must adhere to a strict, very low-fat diet.
By delving into the complexities of FCS and offering practical solutions, this webinar aimed to broaden awareness and understanding while providing helpful tips and tricks for effectively managing the dietary challenges associated with the syndrome.
We are delighted to introduce Sara Otter of Little Dot Art as FH Europe Foundation’s newly appointed Artistic Ambassador. Sara’s art really spoke to us as an organisation and resonated with our patients and stakeholders alike.
Sara has kindly permitted FH Europe Foundation to use her most popular piece “Tree of Hearts” as a symbol for our community. Like us, Sara’s hearts are different shapes and sizes, yet united by the ‘familial’ trunk.
Sara herself is a patient in the neurological arena, and started painting several years ago as a stress relief. Her art was picked up by a publisher and framed prints are now available in some of the best known department stores in the UK such as John Lewis and Dunelm.
“It’s been an honour to be asked to be FH Europe Foundation’s Artistic Ambassador. I’m thrilled, I really am. My grandad died of a heart attack when I was a child and he was only sixty. We also have a family friend with FH, so a charity supporting familial hyperlipidaemias really resonated with me”