Other people whose lives are impacted by FCS or very high triglycerides open up to share their stories with you.
Julie's Story
The Power of Knowing
Meet Julie—mother, wife, and person living with FCS. Join her as she shares her long road to diagnosis, discussing how identifying her condition has not only shaped her into the person she is today, but has helped her manage the burden of her very high triglycerides.
I think a good primary care doctor can coordinate the little things like the standing orders for triglyceride draws or the infusion center.
—Julie, living with FCS
Scott's Story
Becoming Your Best Advocate
For years, Scott was pushed off by doctors, facing the constant misdiagnosis and stigma that many people with FCS experience. Fueling a drive to get to the bottom of his symptoms, Scott became an advocate not only for himself, but for the greater FCS patient community.
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.
—Scott, living with FCS
Fin & Devon's Story
Living Beyond FCS: A Family Affair
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 deal with this thing where you start to have to learn a new language because I was told he had hepatosplenomegaly, which obviously meant nothing to me, but I found out it meant enlarged liver and spleen.
—Fin, parent and caregiver to Devon, living with FCS
Jill's Story
Reclaiming Your FCS Journey
Jill has never known what it's like to not have FCS. Despite facing adversity every step of the way, the mother, caregiver, 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.
—Jill, living with FCS
Your experience could help others who are struggling with very high triglycerides
