Lindsey Sutton is Co-President of the FCS Foundation.
Lindsey was diagnosed with Lipoprotein Lipase Deficiency at five weeks old. As an infant, Lindsey cried often which caused her parents to take her to the doctor. She had lab work done and her blood was pink and milky, resembling Pepto-Bismol. Her triglycerides were over 30,000. Because of this early diagnosis, she was put on a non-fat formula and followed a no-fat, low fat diet as she got older. Lindsey had her first bout of pancreatitis at age 7, then again at 10, 14, and 17. Once she began college, her stress level increased, her diet changed and she experienced pancreatitis every 8 weeks for about two years. As a result, half of her pancreas is damaged, she had to have her gall bladder removed, has scar tissue, stomach discomfort and a bit of a fatty liver. Today however, with a well maintained diet, exercise, and a good combination of medicine, she is healthy and has been pancreatitis free.
Melissa Goetz is Co-President of the FCS Foundation.
She is a mother to three children. Her middle daughter, Giuliana, was diagnosed with FCS (LPLD) when she was 3 weeks old following routine blood work that appeared milky pink with triglycerides over 24,000. At 7 weeks old she was hospitalized with pancreatits, a liver infection and kidney infection. Following her hospital stay, Giuliana was put on a special MCT (medium chain triglyceride) formula which lowered her triglycerides and allowed her to be released from the hospital. Since then, she has maintained a low fat diet (less than 10 grams of fat per day) and has remained symptom free. Giuliana is 4 years old, loves going to school, playing in the backyard and doing flips at gymnastics.
Qingyang Li is Secretary of the FCS Foundation
Yang experienced his first symptoms when he was three months old. He was taken to the hospital because he had incessant crying, rigid body and refused to eat. The doctors were shocked by the high fat content in his blood, but he did not receive a specific diagnosis. His parents were told to not have any more children and that he would not live long. The recurrent severe abdominal pain started at age10 and continued on and off. He received his first diagnosis of pancreatitis in college, but they did not take blood tests to confirm high triglycerides as the cause. He continued to experience more serious and frequent attacks of pancreatitis that prohibited him from obtaining his doctoral degree. Yang came across a book about a diet and recipes for people with high triglycerides. In the first chapter, it listed all the possible reasons a patient might have hyperlipidemia, and this included genetic causes. He diagnosed himself right then and was later officially diagnosed with genetic testing. Yang is now 36 years old and a research assistant. He lives with his wife and daughter.