If you or someone you care for has Familial Chylomicronaemia Syndrome (FCS), specialist
care is available. Speak to your general practitioner (GP)* or primary care physician
about getting a referral.2
*Applicable to UK audiences only
Your team may include some or all of the following specialists:
Primary Care Physician
Endocrinologist
Lipidologist
Dietitian
Pancreatologist
Mental Health Professional
Nurse
Pharmacist
Caregiver
Lean on specialists
Speak to a specialist physician. They may refer you to someone with experience supporting people with very high triglyceride levels. They can speak to you about living with FCS and provide advice on things that can help.3
Understanding your condition
One of the best things you can do to look after yourself is to understand how FCS affects you, including what you can and can’t eat, and the actions you can take to support your overall well‑being.1
Keeping to a very low-fat diet (less than 20g of fat per day) is a more practical way to minimise symptoms such as pancreatitis flare-ups. Restricting added sugars and avoiding alcohol are also highly recommended to help keep triglyceride levels low. While it can be challenging, it is important to communicate your dietary needs to your family and friends, especially those who may cook for you.2,3
Maintain your mental health
If you are struggling to adhere to FCS-related lifestyle changes, you do not have to go through this alone.3 Support is available to you. It might be helpful to speak to a licensed counsellor or therapist, who can work with you to find ways of managing FCS‑related challenges. Some people find approaches such as Cognitive Behavioural Therapy or self-management programmes helpful.3 Connecting with others in the FCS community can also be a valuable source of support.1,2Seeking emotional support is an important part of caring for your overall well-being.3
Stay vigilant
While you do need to maintain a very low-fat diet, you may find that there’s still room to add variety. Your specialist physician or dietitian may have new or updated medical guidance that could help you make suitable adjustments to your restrictive diet.1
At the end of each visit, talk to your healthcare professional about possible changes to your very low-fat diet. Even small changes can make a difference, and your care team can help you find what’s manageable for your daily life.
“Food stopped being the enemy when I learnt how to eat with my husband...starting with what I can eat rather than thinking about what I can’t eat.”
– Jill, living with FCS
Hear from others living with FCS
Watch Jill's story to learn more about her diagnosis journey and how she's living with FCS
“It’s so important to be diagnosed early because first of all, it allows you to stop harming yourself by eating foods you shouldn’t eat.”
– Devon, living with FCS
People with FCS Say the Condition Has an Impact on Daily Life4
Percentage of people reporting the impact of an FCS restrictive diet on life:4
81%
Extremely time consuming
70%
Energy draining
53%
Ineffective at stopping all symptoms
Percentage of people reporting that FCS has a negative impact on aspects of life:4
94%
Employment
58-66%
Emotional and mental well-being
68-82%
Social relationships
Result from an online, anonymous, quantitative survey of 166 people with FCS from 10 countries
(Australia, Canada, Germany, India, Netherlands, Portugal, Spain, Sweden, United Kingdom, and
the United States). Results were patient reported.
FCS is very rare, but you are not alone1
You may face emotional struggles because of the many lifestyle changes involved in managing
the condition.4 Talking to a mental health professional and connecting with others
who have FCS can support your emotional well-being.3,5
“If I was giving someone living with FCS advice, yes it would be to eat a low-fat diet. That’s the sort of obvious one, but remain positive. Fill your time up with things that you really enjoy.”
– Devon, living with FCS
Regular testing keeps you informed of triglyceride levels
If you are diagnosed with FCS, talk to your doctor about scheduling regular monitoring with
your healthcare team. Routine blood tests help you track triglyceride levels and check for
signs of pancreatitis or other complications.4,6,7
Heart UK; The National Pancreas Foundation (US).
According to the European Society of Cardiology and the European Atherosclerosis Society
Guidelines for the management of dyslipidaemias:8
If you are living with very high triglycerides, such as those with FCS, you should have careful and close monitoring of your triglyceride levels
Keeping triglycerides below 10 mmol/L(880 mg/dL) can help reduce the risk
of acute pancreatitis8
Support
Nutrition, exercise, and hydration are important for managing FCS in your everyday life.1
National Pancreas Foundation. Familial Chylomicronemia Syndrome (FCS). Bethesda (MD):
National Pancreas Foundation.Available from:
https://pancreasfoundation.org/pancreas-disease/fcs/. Last accessed May 2026.
Mach F, Baigent C, et al. Eur Heart J. 2020;41(1):111–88.
