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Nerdy Nate FCS Journal

About FCS

My name is Nathan Milkins and I was diagnosed with Familial Chylomicronemia Syndrome or FCS in 2018.

Familial chylomicronemia syndrome (FCS) is a serious disease that prevents the body from breaking down fats.

Eating even a little fat can make someone with FCS ill, and the condition causes chronic symptoms and can lead to potentially fatal pancreatitis. FCS is a genetic disorder passed down from parents. Because it is rare, many healthcare providers have never heard of FCS or may not know how to diagnose it.

Lipoprotein lipase is a digestive enzyme that helps the body break down structures called chylomicrons. People who have FCS have a problem with lipoprotein lipase: it is either missing or broken. Chylomicrons carry triglycerides (a type of fat) to where they are needed in the body for energy. A buildup of these particles causes an increase in triglycerides levels.

Patients with FCS have extremely high levels of triglycerides. Normal triglyceride levels fall below 150 mg/dL. For people with FCS, triglyceride levels can exceed 1,000 mg/dL, even after medication and/or a low-fat diet are introduced.

(Above is from https://www.hormone.org/diseases-and-conditions/rare-diseases/fcs)

This blog is a diary of my journey through this diagnosis and syndrome.  It is hear mostly for my reflection, but wanted to share publicly for any others who needed help or encouragement.

I am not a doctor, dietitian, or medical professional in anyway.  This is just my journey.

If you would like to know more about FCS check out these links below: