Scott, living with FCS
Patient Stories
Real Journeys, Real Impact
These powerful stories from people living with Familial Chylomicronaemia Syndrome (FCS) reveal the strength found in shared experiences and the profound difference one voice can make in transforming diagnosis, treatment, and hope for the entire community.
Living Beyond FCS: A Family Affair
- A Son & Father
- Living with FCS in United Kingdom
Fin and Devon—father and carer, and son with FCS—share how they've learned to live beyond an FCS diagnosis. With the help of an early diagnosis and a strong support system every step of the way, the duo have learned creative ways to approach life. Because life shouldn't be defined by FCS.
You may have FCS, you may care for someone with FCS, but that's not who you are. That's just a part of your life. The things you love in life are really important to keep loving because that's where your positivity comes from.
Reclaiming Your FCS Journey
- Mother & Wife
- Living with FCS in United Kingdom
Jill has never known what it's like to not have FCS. Despite facing adversity every step of the way, the mother, wife, and founder of Action FCS has found a way to reclaim her FCS journey. Listen as she shares her reality of living with FCS, and how it led her to become an advocate for the greater patient community.
It's got to be an engagement between two equals, not doctor-patient because you probably don't know as much as I do about my lived experience, and I probably don't know as much as you do about the medical aspect of it. So let's work together, and we can find a better outcome for everyone.
Becoming Your Best Advocate
- 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 271 mmol/L (24,000 mg/dL) during hospitalisation. 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."
Once I finally had a diagnosis and got close to figuring it out, I jumped both feet in into finding people that had this disease as well because I had been on an island by myself for so long. Just the thought of knowing that there is someone else in this world that has this same thing was very comforting to me.
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