Greenlaker Creates New Foundation for Rare Genetic Disease
We recently were introduced to Yang Li, a Greenlaker who has a rare genetic disease called Familial Chylomicronemia Syndrome (FCS) and started a foundation and support group for others affected by it. We chatted with him to find out more about FCS and how he is trying to help others.
SG: How do you explain FCS to people who have never heard about it?
YL: FCS is a rare genetic disease and only one in a million people has it. I have extremely high level of triglycerides in my blood regardless of what I eat. My body cannot make an enzyme called lipoprotein lipase which is responsible for removing triglycerides from my blood. People like me must be on an extremely low-fat diet to avoid pain and pancreatitis attacks. This is a genetic condition so dieting does not always work.
If I go to an unfamiliar restaurant (which I don’t usually do), I would make a point to notify the waiter that I am allergic to butter and all oil. I have to add that I could not eat any nuts or seeds that are high in fat, no cheese or avocado. People understand allergy, so, that makes things easier for them to understand.
SG: What is your hope in starting this group/campaign?
YL: I was taken to the hospital because FCS caused complications when I was less than 100 days old. The doctors told my mom that I would not live for long. For a long time, I believed that I was the only one with the condition and I would die young. The feeling of loneliness and hopelessness was around me every single day.
Luckily, I found out that there are people who suffer the same condition. Then several of us met each other in Boston. The experience was liberating. When I saw one of the other patients was in her 60s and still going strong I felt very excited. For the first time in my life, I found hope and new possibilities. I started a Facebook page dedicated to FCS (https://www.facebook.com/fightFCS/) this year and am partnering with several FCS patients and caregivers to start a non-profit FCS Foundation. With these efforts, I hope to find and connect with more FCS patients and give them the opportunity to experience what I have experienced before.
SG: What is the hardest thing about living with FCS?
YL: Living under the fear of getting a pancreatitis attack. To avoid pancreatitis attacks, I have to watch my diet, cook my food, take my medicine, and do my exercise religiously every single day. I have to arrange my life around it and say no to socializing activities. If I don’t do these things, I might get punished really hard by a pancreatitis attack. Even when I do all these things, I can still get it. There is no break from it.
SG: So how can Greenlakers help?
YL: We really wanted to get our stories out to the public and encourage people to talk about FCS with us. The more people talk about it, the more likely other FCS patients can find us. For more information, please visit The FCS Foundation website at www.livingwithfcs.organd its Facebook page at Facebook.com/livingwithfcs
SG: Thanks Yang and best of luck!