Finding a community of people who are dealing with the challenges of familial chylomicronemia syndrome (FCS) can provide support and a sense of belonging.
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FCS patient, nutritionist,
Co-president of the FCS Foundation
I was diagnosed with familial chylomicronemia syndrome when I was five-weeks-old so I’ve lived with this condition my whole life. I cried a lot as a baby, but other than abdominal pain, my FCS was pretty mild throughout childhood.
My day-to-day symptoms got worse during college because I was stressed out all the time. I also began to experience severe fatigue that caused me to miss a lot of class, so I was even more stressed! In total, I’ve experienced about 30 episodes of pancreatitis for which I was hospitalized. The absolute worst was when I got pancreatitis and was in the hospital during my dad’s birthday. I hate worrying my friends and family. They are always concerned and I feel like a burden.
I have had a few medical complications as a result of FCS and have a dull ache and burning sensation in my stomach on a daily basis. I do my best to eat less than 10 grams of fat a day. I like to cook, but this is still a challenge. Most importantly, I am an advocate for others like me. FCS will never stand in my way.
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FCS patient, research scientist
I experienced my first symptoms when I was three months old. I was taken to the hospital because I was incessantly crying, had a rigid body and refused to eat—it was probably my first pancreatitis episode. The doctors were shocked at the high-fat content in my blood, but I did not receive a specific diagnosis. My parents were told to not have any more children and that I would not live long.
The recurrent severe abdominal pain started at 10-years old and continued on and off. I received my first diagnosis of pancreatitis in college, but they did not take blood tests to confirm triglycerides as the cause. I experienced more serious and frequent recurrent pancreatitis that prohibited me from finishing my doctoral degree.
I came across a book about a diet and recipes for people with high triglycerides. In the first chapter, it listed all the possible reasons a patient might have hyperlipidemia, and this included genetic causes. I diagnosed myself right then. I wasn’t 100 percent sure because I didn’t have skin problems, but it listed recurrent pancreatitis and I had high triglycerides.
FCS patient, volunteer firefighter and operations manager
It was a long journey to get to a diagnosis because most people are not familiar with familial chylomicronemia syndrome and there is very little information available. As a result, people like me are misdiagnosed for months or years. I had to visit many different specialists to finally get an accurate diagnosis, and in the end it was my wife who found a name for my disease. The diagnosis was eventually confirmed by a doctor. There are a lot of rare diseases out there, so you have to ask the right questions and work with the right specialists to get to the right answers.
Caregiver to her husband Fred
When you love somebody and see them going through the vomiting and the sickness…it’s just heart wrenching. I could also feel his sense of hopelessness, but he was a trooper despite all of this. In some ways, he’s my hero. But to be brutally honest, I got mad at the illness and the situation we were in. Also, and importantly, seek out the care of a support group because it is helpful to hear other patients and caregivers share experiences that are similar to yours. You can also talk about your feelings and express your fears.
FCS patient, business consultant
My doctor and I have a plan that aims to prevent pancreatitis and intervene if it’s unavoidable. Every other week I get my blood tested. We have a “trigger triglycerides value.” If my triglycerides reach this number, we will test my blood again in a week. If numbers continue to rise, I will go on a fat fast—basically, I stop eating all fat—and retest a few days later. If triglycerides are still elevated, we will try other interventions or my doctor will preemptively admit me to the hospital. This means I don’t have to go to the emergency room.
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