Familial Chylomicronemia Syndrome (FCS)
When doctors tested her blood, they found extremely high levels of triglycerides. In fact, her levels were so high her blood was milky and light pink in color. If left standing, her blood would separate with a creamy layer of fat on top.
Due to her high triglycerides, Lindsey has had on-and-off stomach pain and acute pancreatitis, leading to intensive care and hospitalizations at ages 7, 10, 14, and 17. During college, she had acute pancreatitis every 8 weeks for a 2-year period.
Lindsey serves as co-president of the FCS Foundation, applying her experience living with FCS to help others.
Learn more about Lindsey’s story in a letter she wrote to her disease.
Familial Partial Lipodystrophy (FPL)
Although she was not diagnosed with Familial Partial Lipodystrophy (FPL) until she was 37, Andra was aware from a young age that she and her family members had a different “look,” with muscular arms and legs, and that she had health issues related to her lack of visible fat.
Her eventual diagnosis of FPL explained her years of high triglycerides and other lipid measurements, high blood pressure, diabetes, exhaustion, and insatiable hunger.
As a result of her experience, Andra cofounded Lipodystrophy United – an organization dedicated to supporting people and families facing the challenges of lipodystrophy.
High Lipoprotein [LP(a)]
At age 39, Sandra had a life-threatening cardiac event – a 95% blockage of her proximal left anterior descending coronary artery.
Despite her blocked artery, Sandra was in great health: low cholesterol, controlled blood pressure, healthy diet, and she had just run a marathon the year before. The only thing that doctors could find that could explain her heart disease was high Lp(a), a genetically determined parameter. High Lp(a) cannot be controlled by diet or exercise.
Sandra’s experience – and the fact that her father suffered an early, fatal heart attack – led her to form an organization called the Lipoprotein(a) Foundation.
To Greg, hATTR amyloidosis is a family disease. Once his brother passed away, Greg knew he had to be proactive and decided to get tested. After discovering that he was positive for hATTR, Greg knew that his life would never be the same.
Since being diagnosed, Greg has made his mission to educate his family about hATTR. Too often hATTR is misdiagnosed and Greg hopes that by taking precautions and avoiding this period of misdiagnosis his family members will be able to receive the correct support and care faster. Greg continues to worry about his children and grandchildren having to deal with hATTR, however he is hopeful for future medicines and treatments for the disease.