Living with FCS

Who are we

LivingwithFCS.org is the site for all Familial Chylomicronemia Syndrome (FCS) patients, caregivers and family members that offers information, resources and support.

 

About FCSDonate
Getting Involved

Be a part of our FCS Community

Meet our Medical Advisory Board

 Check out the NEW profiles of our Medical Advisory Board.

Check out our facebook page

We are an active group online.  Check out our Facebook page to see what we are up to and how we are advocating for those Living with FCS.

A Mother’s Story

A Mother’s Story

To My Younger Self After My Daughter’s Rare Disease Diagnosis Dear Melissa, Well, this isn’t what you were expecting. Your mind is racing, you feel numb and you’re in shock. It’s OK. It’s all OK. Because here’s the thing: You’re going to feel a lot of things over the...

Justin’s Story

Justin’s Story

Throughout my childhood, I was a very active kid. I spent many days working on my grandfather’s dairy farm and enjoyed skiing and playing football, soccer and basketball. While to others I seemed like a normal relatively healthy boy, looking back I now can see that I...

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As we work with those Living with FCS – we sometimes need your help.  Contact us to find out how you can get involved..

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What is FCS

“Familial Chylomicronemia Syndrome (FCS) is a rare genetic disease which can have devastating effects on its victims,” says Dr. Seth Baum, a preventative cardiologist who specialized in FCS. “The creation of the FCS Foundation will provide patients, caregivers, and healthcare providers the opportunity to identify and support best treatments, disseminate meaningful lifestyle management tools, and develop more accurate diagnostic systems for individuals going forward.”

FCS signs and symptoms

Familial chylomicronemia syndrome (FCS) is genetic, which means it is always with you. The age at which patients first show symptoms and the types of symptoms they experience may vary. Some people may have noticeable warning signs of FCS when they are young. Others may not feel anything until adulthood.

About This Website

LivingwithFCS.org is a site for all Familial Chylomicronemia Syndrome (FCS) patients, caregivers and family members that offers information, resources and support. The goals of this site are to build connections and offer resources and support to help FCS patients become informed advocates for themselves and their disease. This website will share new developments and information to help patients and families on their journey and is focused on helping to build the FCS community through providing a forum for patients to meet, exchange questions, share challenges, and offer support to one another. Global Genes is able to produce this site with an unrestricted educational grant from Akcea Therapeutics.

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