Boston Family Forum

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The FH Foundation hosted an FH Family Forum in Boston on December 10. This event brought together an amazing group of individuals who have Familial Hypercholesterolemia (FH), their family members, and FH experts Dr. Sarah de Ferranti of Boston Children’s Hospital and Dr. Linda Hemphill of Massachusetts General Hospital, for a morning of education, community, and inspiration. Families who attended the Family Forum travelled locally from the Boston area, and from as far away as New Jersey and New York!

Dr. Hemphill and Dr. de Ferranti led an interactive discussion about FH diagnosis and treatment both for children and adults. Patients learned about the importance of early and consistent treatment with first-line statin therapy to reduce the risk for cardiovascular disease, and about other options, such as ezetimibe and PCSK9 inhibitors for patients who need additional help lowering their LDL cholesterol. The doctors shared the latest understanding that FH affects approximately 1 in 250 people worldwide, based on genetic and population studies, including Dr. de Ferranti’s own research. Cat Davis Ahmed, Director of Outreach for the FH Foundation, gave an overview of the FH Foundation’s efforts to improve the rate of diagnosis and proactive treatment for FH, shared what we are learning from the CASCADE FH™ Registry, and emphasized the powerful impact patients can have when they participate in FH research.

This was the first time many had met another family with FH. They learned from each other’s experiences and about resources the FH Foundation has to offer, including ways to connect with others who have FH.

One of the strongest messages we heard was that seeing an FH expert can make all the difference. Dr. Hemphill’s and Dr. de Ferranti’s patients repeatedly shared how grateful they were for the excellent and individualized care they received and the positive impact expert care has had on their FH management.

“I was diagnosed in the 1960s as a teenager. Initially, I didn’t take my condition seriously and I ignored the diagnosis for many years. As I got older, I became more understanding. Before being treated for FH, my total cholesterol was 400. For three yeas, I was meeting with my doctor regularly and nothing was working. My doctor didn’t understand the genetic component. So, I went to the internet and looked up ‘cholesterol doctor’ and was connected with Dr. Hemphill. In 30 days, she got my total cholesterol from 380 down to 180. The lack of knowledge is staggering when this condition is so treatable.”
– FH Family Forum participant, Boston
“I had bypass surgery at age 35. For years, my wife did extensive research and wanted to figure out what condition I had. She knew there was something else wrong with me because I am healthy, yet I have such elevated cholesterol levels. She found the FH Foundation, looked into the resources they provide for FH patients, and now knows more about my condition than I do. She helped me figure out what medication I should be on. She’s not even a doctor! My LDL cholesterol was 130 on statin plus ezetimibe and one other medication. A month ago, my wife and I persuaded my doctor to prescribe me a PCSK9 inhibitor. My LDL is now 37!”
– FH Family Forum participant, Boston
“The FH Foundation has created a family atmosphere, and we are very thankful for that. You’re not alone, there are solutions out there.”
– Jonathan Karas, FH Foundation Advocate for Awareness

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