Patient Education
Learning from Lived Experience
Watch and listen to a webinar on real-life insights about communicating with healthcare providers, coping with stress, supporting mental health and navigating social realities of FCS.
Managing Life with FCS: A Peer Support Toolbox
Pull up a chair at our virtual kitchen table for an honest, supportive conversation with Julie and Scott—two individuals living with Familial Chylomicronemia Syndrome (FCS).
They’ll share practical tips and tools, everyday strategies,
and personal stories that speak to the real-life experience
of managing a rare, and often isolating, condition like FCS.
Together, we’ll explore topics like:
- Navigating Medical Interactions
- Managing Mental Health & Stress
- Living Socially with FCS
Watch Short Clips by Topic
Navigating Medical Interactions
How to communicate with your healthcare provider and prepare for appointments or the hospital
Managing Mental Health & Stress
Coping with stress and supporting emotional wellbeing
Living Socially with FCS
Staying socially connected and navigating the unique challenges FCS can bring to relationships and daily life
Our Webinar Panelists
Meet Scott
Father & Husband
Living with FCS in North Carolina
Scott’s symptoms began in adolescence with high cholesterol and eruptive xanthomas, but his first pancreatitis attack at 30 launched a decade with many medical crises. His triglycerides once reached 24,000 mg/dL during hospitalization. For nearly a year, Scott found himself in the ICU for two weeks every eight weeks—missing work, watching his three young sons wake to find their father gone again. Doctors repeatedly accused him of alcoholism, creating deep shame around symptoms that weren’t his fault.
Through relentless self-advocacy and online research, Scott discovered FCS by searching “recurring pancreatitis attacks” and “why is my blood milky?” This led him to Action FCS and ultimately to his diagnosis. The relief of finally having a name for his condition was profound. “I could no longer get upset at myself when a flare happened—there was a reason,” he reflects. Meeting a 75-year-old with FCS at his first patient conference transformed his outlook, proving a long life was possible.
Now Scott focuses on helping others avoid his painful journey. His advice: “Find a mentor who can guide you through this process. Form a medical team that collaborates on your care. Switch to an extremely low-fat diet—it starts with good nutrition. Show yourself grace during frustrating moments, but get back on the horse. You’re stronger than you think.“
Meet Julie
Mother & Wife
Living with FCS in Minnesota
Julie’s health journey began at 18 when blood labs showed triglycerides over 1,000 mg/dL, though no connection to FCS was made. Her first acute pancreatitis attack at 20 left her unconscious for much of her hospital stay. After having her son at 28, monthly pancreatitis flares returned with devastating regularity—her triglycerides escalating from 2,000 to over 10,000 mg/dL. She spent 7-10 days hospitalized every month for two years, missing precious time with her infant son and husband.
Desperate for answers, Julie underwent numerous surgeries over seven years, including a radical hysterectomy at 34 that ended her dreams of a larger family. The breakthrough came during a plasmapheresis procedure when a practitioner noticed chylomicrons in her blood. This observation led her to research FCS online and bring her findings to her lipidologist, finally receiving her diagnosis in Fall 2017—three months after learning about chylomicrons.
Today, Julie channels her 25-year medical odyssey into helping others avoid similar suffering. “Give yourself grace,” she advises newly diagnosed patients. “Find your support system—family, friends, online communities. You are not alone. This disease does not define you. You can still have dreams and goals. Make plans, be flexible with adjustments, but don’t stop dreaming.“
Resources
Find more information on some of the specific resources discussed in the webinar. Arrowhead offers in-depth patient and caregiver resources on FCS and high triglycerides.
Spotlight on FCS Paper
Providing perspectives from patients and caregivers who experience living with Familial Chylomicronemia Syndrome (FCS).
Questions to Ask Your Doctor
The National Pancreas Foundation has created a useful tool to support conversations with your doctors.
ER Document
An ER document, also known as emergency department (ED) documentation, helps to capture crucial information about a patient’s condition, treatment, and disposition.
Find a Lipid Specialist Tool
The Foundation of the National Lipid Association has a tool to help search for a healthcare provider specializing in lipid disorders near you.
Patient Stories
Real voices sharing personal journeys with FCS—from diagnosis challenges to treatment triumphs.
Patient Advocacy & Centricity
Discover how we’re putting patients at the center of everything we do.
Triglyceride Resources
Disease education and management for patients living with high triglycerides.