By Andrew Baldassarra, as told to Hallie Levine
I’ve lived with FCS for almost three decades. It’s a challenging condition, but there are new treatments available to help you manage it better. It hasn’t stopped me from working, raising a family (I have a beautiful wife and two kids, aged 7 and 4) as well as staying active and socializing. Here’s what I want anyone newly diagnosed to know.
My FCS Diagnosis Story
I’m lucky, because I got diagnosed at a relatively young age. Most people don’t learn they have FCS until later in life. My mom noticed these big bumps on my hands and feet when I was 4. She took me to a dermatologist, who diagnosed me with xanthomas, which happen when a certain type of fat known as triglycerides build up underneath your skin.
Since it’s unusual to see xanthomas in such a young child, the dermatologist referred me to a cholesterol specialist at the Hospital for Sick Children in Toronto. He diagnosed me with FCS. My triglycerides were apparently so high that when they drew my blood, they noticed that it was pink with fat, rather than a typical red.
I had to stay at the Hospital for Sick Children for several weeks. My doctors were worried that I would develop pancreatitis, a very serious complication of FCS that causes inflammation of the pancreas and possibly death. Since there weren’t yet drugs available to manage FCS, they wanted to make sure they could lower my triglycerides enough so I could safely go home. I had to fast for several days while I was given IV fluids.
As hard as that was, I’m grateful I got diagnosed so early. Most of the people I’ve met with FCS weren’t diagnosed until their 20s or 30s, usually through routine bloodwork, since they had no other symptoms. But high triglycerides can still over time silently cause damage such as heart disease.
Learning to Live With FCS
My childhood was definitely difficult. Back then, the only treatment for high triglycerides was a strict low-fat diet. I learned to compulsively check food labels for fat content. I would memorize the exact amount of fat in certain foods or certain packaged products.
When my other friends would eat high-fat food, like cake, pizza, or ice cream, I’d have to stay away. It felt weird, and was also tough to talk to others. How do you explain to other 9-year-olds that you can’t eat more than 15-20 grams of fat every day? It was hard enough for me to wrap my head around it.
Life became even more challenging once I hit my teens. My appetite increased by leaps and bounds due to growth spurts and increased physical activity, and it was hard to get all the calories I needed on such a low-fat diet. Plus there were so many food temptations when I was out with friends. Despite my best intentions, my triglycerides began to creep up.
My doctors first put me on a cholesterol-lowering drug that’s also been shown to reduce triglycerides. Over the next decade, my doctors would add another statin as well as prescription fish oil.
These medications did help, but I still grappled with other side effects. High triglycerides have been linked to cognitive impairment, especially brain fog. I struggled a lot in school because I was often very forgetful, and it was difficult to concentrate. I also found it hard to fall and stay asleep. The college bar scene was tough to navigate, too, since alcohol can raise triglyceride levels. Luckily I found a good group of friends who, like me, weren’t big drinkers.
Thankfully, I met my wife almost two decades ago, so we could navigate through most of this together. I told her I had FCS on our first date. She didn’t bat an eye. Once I explained it to her, she said, “OK,” and that was that. She’s always been supportive of my diet and has worked with me to make meals and snacks that are low-fat and healthy. It really helps to have a partner to help me get through daily challenges.
Since my diagnosis, I’ve only been hospitalized once, during the 2020 COVID-19 pandemic. We were stuck at home, where I couldn’t exercise, and I was eating poorly. I developed pancreatitis and ended up in the hospital on an IV drip with no food or water for three days. Since I was in isolation, I couldn’t see my wife or kids, either. I was in pain and so frightened. After that, I vowed I’d do everything I could to make sure it never happened again.
A New Drug for FCS
When I was in my 20s, I asked my doctor if he thought there would ever be a miracle drug for FCS. He said no. But I was lucky enough to be able to join a clinical trial in 2022 for a new drug that was FDA-approved in the United States for people with FCS in November 2025.
It helps to reduce triglycerides since it suppresses the production of APOC-III, a liver protein that raises triglyceride levels. It’s been shown to reduce triglycerides by almost 60% compared to people who just get a placebo. Before I started it, my triglycerides hovered at around 17 mmol/L, which is considered dangerously high. Now, they are around 3.8. It’s still considered moderately high, but much more manageable.
Today, I take my medication, along with a prescription fish oil and a statin. These drugs don’t replace a healthy diet, but when they are used together they can help prevent the rise of triglycerides to life-threatening levels.
Daily Life With FCS
Even with all my medications, I don’t eat more than 20 grams of fat daily. When it comes to FCS, it doesn’t matter if it’s “good” or “bad” fat, either. You have to stick to strict limits.
I usually map out my meals in advance. Breakfast is often plain oatmeal, lunch is a salad topped with lean protein like fish or chicken, and then dinner is more lean protein with a whole grain, a fruit, and a vegetable. If we go out to eat, I’ll check the restaurant’s menu beforehand to calculate the lowest-fat entrees. Once I’ve done that, I’ll modify what I eat earlier in the day to ensure I don’t go over my daily fat allotment.
Sugar matters, too. I can’t eat desserts like cookies or chocolate, since they can also raise triglyceride levels. Even a simple piece of white bread can raise blood sugar, which in turn causes my liver to convert all that extra glucose into triglycerides. People often assume “natural” sweeteners like honey or agave sugar are OK, but they raise blood sugar, too.
I’ve learned to also be careful with so-called “healthy” fats. I used to take MCT (medium chain triglyceride) oil , which is derived from coconut oil and can be used to provide energy and calories for people with FCS. But it raised my triglycerides, too.
While I do eat foods rich in omega-3 fatty acids, like fatty fish and nuts, I do have to keep them in moderation and count them towards my daily fat quota, too. Surprisingly, a lot of health care professionals don’t realize this. I’ve had doctors tell me that these foods are fine. That’s why it’s so important to find a doctor who is knowledgeable about FCS.
I also have always been open about my FCS to my kids, who are 7 and 4. FCS is a recessive genetic disorder. That means both parents have to have a certain gene mutation to pass it onto their children. My wife got tested before we started a family, and she doesn’t have it. But my kids know Daddy has a sensitive tummy and can’t have a lot of fat. When I make my son eggs in the morning, for example, he gets fried eggs, and I have hard-boiled egg whites. But I also reassure him that it’s safe for him to have fat, since he’s growing. I don’t want my kids to develop disordered eating habits.
Advice for Others Living With FCS
Reach out to support groups. An FCS diagnosis can be very isolating. You most likely will never meet anyone else with the condition unless you connect to a support organization.
I remember when I finally met another person with FCS three years ago. Our doctor introduced us as we were both there at the same time to participate in the clinical trial. It was definitely strange. I’d spent almost three decades waiting to meet someone else with the same rare disease, and we literally had nothing in common other than the fact that we both had FCS. We definitely felt a connection, though. We swapped diagnosis stories and commiserated about the challenges of sticking to a low-fat diet.
One good way to meet people is through the FCS Foundation. There’s also a Facebook FCS support group.
Stay active. Exercise is important, both for your physical and emotional health. Aerobic activity has been shown to help reduce triglycerides. I also find that it helps to boost my mood and allows me to feel more in control. I do activities like biking, running, and swimming most days of the week.
Focus on fresh foods. Fresh is best. Processed and packaged foods often contain a lot of hidden fat. Even if they don’t, it’s often hard to just eat the recommended serving size. I try to avoid anything that’s in a box. When I cook, I try to bake or grill, rather than fry, to lower fat content. I also swear by this dessert to satisfy my sweet tooth: low-fat Greek yogurt topped with fresh or frozen mango. It offers the same creamy richness of ice cream with a fraction of the fat content.
Find FCS-focused doctors. I’m really lucky to live in Toronto, where there are excellent hospitals and knowledgeable doctors. But if you’re not in a big city with amazing world-class doctors, you may not get the care you need. Thankfully, we have technology on our side, so you can connect with health care professionals for a virtual consultation.
One good resource is the Find a Lipid Specialist tool on the Foundation of the National Lipid Association’s website.
Finally, some last words of wisdom to anyone who’s newly diagnosed: There is light at the end of the tunnel. Keep going. We all hit walls sometimes in our FCS journey. But if you join support groups, connect with others, and find health care providers knowledgeable about the condition, you’ll do well. FCS is one of those diseases where it’s easy to feel alone and that your back is up against the wall. But with the right lifestyle and medications, you can lead a healthy, full, rewarding life.