Actor portrayal; not an actual person with very high triglycerides.
Familial chylomicronemia syndrome (FCS) is a rare genetic condition that makes it difficult for the body to break down triglycerides. Even a little fat in food can make someone with FCS very sick. People with FCS must carefully follow a strict low-fat diet to avoid serious risks like pancreatitis.
People with FCS have a very high risk for pancreatitis due to buildup of triglycerides in the blood. Pancreatitis is a painful inflammation of the pancreas. It can be sudden and intense, and often requires staying in the hospital.
Actual person living with FCS.
Actual person living with FCS.
Eli was diagnosed with FCS as a child. From everyday challenges to his first experience with pancreatitis, Eli and his parents share what it's like living with and caring for someone with FCS.
Watch more stories from people with FCSLearn about tools to help you speak up and take control of your health when speaking with doctors.
FCS can be managed with an FDA-approved prescription medicine.
A doctor can make an initial diagnosis of FCS by looking for these signs.
Extremely high triglycerides of 880 mg/dL or above on more than 1 blood test
Blood that looks fatty or milky in the lab after it is drawn
Severe, sometimes daily, stomach pain that is often described as back pain
Little or no improvement in triglyceride levels with typical triglyceride-lowering medications
High triglycerides that are not caused by diet, alcohol, or medications known to raise triglyceride levels
Since FCS is a rare genetic disorder, people with symptoms or a clinical diagnosis of FCS may benefit from a test that checks to see if they have one or more of the genes that causes FCS.
While genetic testing is available clinically at commercial laboratories, cost and access may be factors to consider.
Learn more about the options available to people looking to receive a genetic confirmation of FCS.
Managing FCS requires following an FCS-friendly diet and lifestyle plan, even while taking prescription medicine. Your healthcare team is there to support you and work with you along the way.
People with FCS should limit their diet to less than 20 grams of total fat (equivalent to fat content of about 1 tablespoon of olive oil) spread throughout the day.
Limit simple carbohydrates like sugar, candy, juices, and soft drinks as well as refined carbohydrates like white flour, white bread, white rice, and many breakfast cereals.
People with FCS should avoid alcohol as it can raise triglycerides significantly.
For people with FCS, working with a Lipid Specialist isn’t just helpful, it can be key to managing the disease.
Living with FCS means managing more than just symptoms, it means maintaining a healthy triglyceride level. A Lipid Specialist has advanced skills in the management of triglycerides.
For people with FCS, working with a dietitian can make healthy eating less challenging. An RD or Registered Dietitian Nutritionist (RDN) can create meal plans that give you the nutrients and calories you need in a way that fits your lifestyle.
Not all dietitians or nutritionists are qualified to help you manage your FCS. Make sure you work with someone who has the credentials of RD or RDN. You can also ask your doctor to recommend a registered dietitian or use a tool by the Academy of Nutrition and Dietetics.
Learn what Lipid Specialists do, how they manage FCS, and how to find the right one to support your care and quality of life.
Eating a low-fat diet can feel challenging at first, but a few simple tips can make it easier. Use this guide to help you manage and maintain an FCS-friendly eating plan.
