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.
I wish doctors had asked me more questions about my symptoms and tested me for some less common health issues. I wish I had been referred to a lipid specialist right away.
– Justin
FCS patient, volunteer firefighter and operations manager
