Chloe shares about living with HoFH

A Conversation with Chloe: Living with HoFH

Chloe's family has made advocacy a family tradition. Her father, Scott, and her brother, Luke, are Family Heart Foundation Ambassadors, and her sister Hannah will be training to be an Ambassador soon! Scott even decorated his beloved bike to transform it into the Motorcycle that Saves Lives. Today, Chloe is a senior in high school and lives with homozygous familial hypercholesterolemia (HoFH), the rare and more severe form of familial hypercholesterolemia (FH). Chloe has been aware of and treating her condition since she was a small child, so we wanted to ask her about her life with HoFH.

When did you find out you had HoFH?

Chloe shares about living with HoFH

Chloe: "Well, I found out at the age of five when my parents took me and my brother and sister to get tested."


How was HoFH explained to you?

Chloe shares about living with HoFH

Chloe: "Well, since I was diagnosed at such a young age, it was really only explained to me as something that I needed to take medicine for and watch out for and eat healthy and stuff like that. But as I grew up, it was explained more thoroughly by my doctors and my parents."


How did the diagnosis change your life?

Chloe shares about living with HoFH

Chloe: "The diagnosis has changed my life and a lot of positive ways. I've had so many great opportunities with HoFH and I've met a lot of great people through HoFH as well."


What has it felt like to live with threat of heart disease as a child and a teenager?

Chloe shares about living with HoFH

Chloe: "Well, as a child, again, I was young. I don't really remember it. And I didn't really care or understand enough about the severity of it. So I wasn't really that bothered. And then as a teenager, as I got older and I found out what it really was and what it means and that I will live with this for the rest of my life and stuff like that. It became very serious and yeah, but I definitely learned how to deal with it better as a teenager."


How is your life different from others your age?

Chloe shares about living with HoFH

Chloe: "I would say my life isn't too different from other people my age, except for the fact that, you know, I need to go to the doctors, I need to get bloodwork, I need to take medicine, stuff like that."


How did you find the Family Heart Foundation?

Chloe shares about living with HoFH

Chloe: "Well, my dad actually found it and he started working with the people there. And then he shared all the information to me and my siblings and the rest of my family."


 

What gives you hope for the future?

Chloe shares about living with HoFH

Chloe: "What gives you hope for the future? What gives me hope for the future is that I know that people are constantly advancing our medicines and treatment options, and eventually there will be something for everybody out there."

 

 


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