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Yajaira talks about her journey with very high triglycerides—from experiencing pancreatitis for the first time, to finally becoming empowered with the information she needs to better manage her disease.

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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.

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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.

Closed captions available in English and Spanish for this video.

“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.”

Closed captions available in English and Spanish for this video.