Other people whose lives are impacted by Familial Chylomicronaemia Syndrome (FCS) have shared their stories and experiences
Fin & Devon’s Story
Living Beyond FCS: A Family Affair
Fin and Devon – father and carer, and son with FCS – share how they’ve learned to live
with 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."
– Fin, parent and carer to Devon, living with FCS
Jill’s Story
Reclaiming Your FCS Journey
Jill has never known life without FCS. Despite facing adversity every step of the way, the
mother, carer, 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
Scott’s Story
Becoming Your Best Advocate
For years, Scott was facing constant misdiagnosis and stigma that many people with FCS
experience. Fuelling 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 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 is very comforting.”
– Scott, living with FCS
Conventional management options
If you are living with FCS, sticking to a very low-fat diet is central to managing the condition1
