An FH diagnosis is a lifelong journey for patients and the people that love them. It is often a path of uncertainty. Despite the fact that FH is a relatively common genetic disorder that affects approximately 1 in 500 people, there isn’t a lot of awareness around FH. It is estimated that only about 20% of FH patients are currently diagnosed. Of the nearly 80% that are undiagnosed, many will have a cardiac event or a stroke before the FH diagnosis is made. Because of this lack of awareness, newly diagnosed patients often feel that they are alone on their FH journey. These stories are here to help you understand that you are not alone and to help you connect with others who are living with FH too.
“FH is not an individual diagnosis; it’s a family diagnosis. I’m also learning about the larger FH community that is coming together. … There are many other families like mine around the world and together we will learn, love and live life to the fullest.”