Personal Stories
Personal Stories
Actor portrayals.
Not actual patients.
Personal Stories
Meet actual people living with familial chylomicronemia syndrome (FCS) as they share their journeys and what life with this rare condition is really like.
Meet Eli
Eli’s journey with FCS began in childhood, alongside his brother Ethan and his parents, Ann Marie and Ron.
His parents first noticed something wasn’t right when Eli, just six months old, had blood in his stool. Years later, Ann Marie received the call she had feared for 18 years—Eli was having his first episode of pancreatitis.
Meet Nicole
For more than 20 years, Nicole lived with very high triglycerides, stomach pain, pancreatitis, yellow skin bumps called xanthomas, brain fog, and fatigue.
She spent years searching for answers but was often misunderstood. Eventually, she found a care team that listened, acknowledged her condition, and helped her finally get clarity.
Meet Justin
“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.”
Actual people living with FCS.
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Actor portrayals. Not actual patients.