Familial Chylomicronaemia Syndrome (FCS) is a rare inherited disorder in which the body cannot properly break down fats (triglycerides) after meals. Normally, the enzyme Lipoprotein lipase (LPL) helps chop up large fat-rich particles called chylomicrons so the body can use or store that fat safely. In people with FCS, LPL (or its helpers) is missing or malfunctioning, so chylomicrons accumulate in the bloodstream and triglyceride levels can soar to ten- or even one-hundred-fold above normal.
Because of this accumulation, a cascade of complications can follow:
- Severe, recurrent episodes of inflammation of the pancreas (acute pancreatitis), which can be life-threatening.
- Physical signs such as milky blood samples, fatty deposits under the skin (eruptive xanthomas), or the ‘milky’ appearance of retinal vessels (lipemia retinalis).
- Chronic fatigue, “brain fog”, digestive discomfort, anxiety around food, social isolation — because even a small amount of fat in a meal can trigger symptoms.
- A major burden on daily life: strict dietary restriction, constant vigilance, frequent hospitalisations, and the psychological toll that comes with a rare and little-known disease.
Because FCS is so rare (estimated around 1 to 10 in 1 million people) and because its symptoms overlap with more common disorders, it often goes unrecognised or misdiagnosed.
Ref: Javed F, Hegele RA, Garg A, et al. Familial chylomicronemia syndrome: An expert clinical review from the National Lipid Association. J Clin Lipidol. 2025;19(3):382-403. doi:10.1016/j.jacl.2025.03.013
Imagine living with a condition no one’s heard of. You eat carefully, you monitor your body, you skip the foods everyone else enjoys, while the world assumes you’re just “fine”. That’s life with FCS for many. An Awareness Day shines light into those shadows so that:
- Recognition increases.
When clinicians, dietitians, emergency doctors, even family members become aware of FCS, early intervention becomes more likely. The better it’s seen, the less likely it is for someone to suffer a dangerous pancreatitis without warning. - Support builds.
Awareness creates community. It helps those living with FCS feel less alone, connects caregivers, advocates, researchers, and funders. It can lead to shared stories, practical tips, and a sense of solidarity. - Research is fuelled.
Rare diseases only get the spotlight when people talk about them. When awareness rises, funding, clinical trials, and therapy development follow. For FCS, where therapies have been extremely limited, this is especially crucial. - Everyday life is improved.
By educating friends, family, employers, schools, and restaurants, we make the world more navigable for someone with FCS. Small changes, such as a low-fat menu option, an understanding peer at a lunch table, a doctor who asks “have you ever had milky blood?”, can make a big difference. - Celebration of resilience.
Despite the challenges, individuals living with FCS often show incredible courage, adaptability, creativity and care for their bodies. An Awareness Day honours their journey and affirms: “We see you. We stand with you.”
Creating real change takes more than awareness, it takes action. Here’s how you, your organisation or community can contribute meaningfully to FCS Awareness Day and beyond:
- Share knowledge: Use social media posts, local newsletters, clinics, schools or workplaces to spread accurate information about FCS. Helping someone say “that might explain what I’ve been experiencing” is powerful.
- Encourage open conversation: Encourage individuals affected by FCS to share their story. Hearing real-life voices helps break isolation and builds empathy.
- Support medical and research efforts: Whether through donations, volunteering in advocacy groups or supporting rare-disease research, you can help accelerate better diagnostics, treatments and support systems.
- Promote inclusive environments: If you’re a teacher, employer, event planner or food-service provider, help make social contexts more FCS-aware: low-fat menu options, understanding of dietary restrictions, flexible scheduling around health events.
- Ask questions & stay curious: Encourage healthcare providers to think of FCS when they see extreme triglyceride levels, repeated pancreatitis, or unusual skin/eye changes. Early recognition can make a big difference.
- Celebrate resilience: Recognise the courage it takes to live with a rare disease. Awareness day is not just for symptoms and struggle, it’s for strength, hope, community and the possibility of better futures.
