Patient Stories

Scott, living with FCS

Real Journeys, Real Impact

These powerful stories from people living with 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.

The Power of Knowing

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.“

I think a good primary care doctor can coordinate the  little things like the standing orders for triglyceride draws.

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 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.“

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.

Living Beyond FCS: A Family Affair

A Son & Father

Living with FCS in United Kingdom

Fin and Devon—father and caregiver, 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.