Actor portrayals.
Not actual patients.
Familial chylomicronemia syndrome (FCS) is a rare genetic condition that makes it difficult for the body to break down TGs. 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 TGs in the blood. Pancreatitis is a painful inflammation of the pancreas. It can be sudden and intense, and often requires staying in the hospital.
Reducing the risk of pancreatitis is one of the most important reasons for people with FCS to strictly manage their TGs.
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 FCSLiving with FCS can be hard, especially when the people around you don’t understand what you’re going through. Our guide can help you explain your symptoms and the support you need.
FCS can be managed with an FDA-approved prescription medicine available for adult patients with FCS.
A doctor can make an initial diagnosis of FCS by looking for distinct signs of FCS.
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. If you haven’t been tested before and you would like to take a genetic test for FCS, speak with your doctor about options.
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 TGs 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 TG level. A lipid specialist has advanced skills in the management of TGs.
For people with FCS, working with a dietitian can make healthy eating less challenging. A registered dietitian 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.
