The Importance of Proper FCS Nutrition

Wahida Karmally, MS, RD, CDE, is the Director of Nutrition in The Irving Center for Clinical Research and an Associate Research Scientist and Lecturer in Dentistry at Columbia University. While at the National Lipid Association's (NLA) 2018 Scientific Sessions in Las Vegas, Nevada, she sat down to explain the importance of nutrition and support in patients with familial chylomicronemia syndrome (FCS) and the emotional stress a strict, regimented diet can have on patients.

Karmally: When a person has FCS, it’s always very frustrating for them to eat in somebody else’s house and manage holidays. At times, patients tell us they prepare their own food to match the menu at their host’s place so that they can actually eat their own food, but which is not cooked with any fat. People do that and you also have to be prepared with snacks when you travel, because you can’t just go out to any deli and pick up a sandwich since it can be loaded with a lot of fat. There are a lot of things that you have to plan before you have an outing.

At times it’s so frustrating, they may develop an eating disorder like bulimia. They eat it because they want to eat it, but then they get bulimic. A lot of counseling is needed, and when a person has a rare disease like FCS, the healthcare team has to provide that support on an ongoing basis. That’s really important because the patient should be able to call me and say, “I’m planning a party and I’m going to have all these guests how do I plan the menu?” or “I’m going to a holiday party at my Aunt’s place, I don’t feel very comfortable telling that I have this problem or sharing it with other guests, so what should I do?” We should be able to support the patient and tell them how to manage this outing that they are planning.

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