Patient Video - What self-management and lifestyle practices do you follow for your FCS?
Charles describes some of the ways he manages the physical and emotional aspects of living with Familial Chylomicronemia Syndrome (FCS). He felt lonely and emotionally-detached when he was first diagnosed. By changing his mindset and staying connected with other people with FCS, he felt encouraged to move forward and do better. Online resources and the FCS patient communities on social media have helped him overcome some of the isolating aspects of his condition. Charles also talks about adopting a disciplined approach to diet and physical activity to stay as healthy as possible. Lastly, he recommends speaking with your doctor about participating in clinical trials.
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Patient Videos
1.
When did you find out you had FCS? How was it diagnosed?
2.
Do any of your family members have FCS?
3.
How often do you see your doctor about FCS? What do you discuss?
4.
What foods and diets do you avoid for your FCS?
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What self-management and lifestyle practices do you follow for FCS?
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Do you exercise as part of your routine for managing FCS?
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What are the biggest challenges you face living with FCS?
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What resources do you find useful for managing your FCS?
