Family Heart Ambassador - Brianna's Story - Living with FH

I Started Putting Things Together: Brianna’s FH Story

“The most unique aspect of my story is probably that I’m adopted.” Brianna grew up without her biological family history, and she didn’t get her cholesterol checked until she was 18 years old. “Even then, my LDL was 210, but no one told me or my mom that it was anything serious because I was a young, active kid who had been an athlete my whole life.”

As Brianna left for college and branching out on her own, she grew curious about her biological parents. Considering she chose to study genetics, it seems reasonable she would be interested in her own inherited genes.

 

“Some adoptees are not always curious, but I was.”

 

“I’m an adopted person who sought to find out who their genetic family was,” she explains. “I know some adoptees are not always curious, but I definitely was. So I did the self-DNA testing,”

This led her on a journey to meeting her birth mother and then her birth father. “When I found him, we talked on the phone a bunch, and he was really great,” she said. She also discovered half-siblings, and some other surprising news.

 

“What tipped off alarm bells in my head was when I asked about any medical history I should know.”

 

Brianna with her Biological Father“What tipped off alarm bells in my head was when I asked about any medical history I should know. My birth father said he had his first heart attack when he was 40, and he’d had multiple bypass surgeries.”

Brianna’s birth father also told her his sister had a stroke in her late thirties, and his brother passed away in his forties from a heart attack. When she told her friends and family about this surprising discovery, they told her that her newly-discovered family had a different lifestyle so it probably wasn’t something she needed to worry about.

But something in Brianna’s gut told her this was not a coincidence. “I looked back at my health records from when I was a child and found another time my cholesterol had been checked.” It was 180, and no one had alerted her or her parents.

 

“I was the first person who had come to him saying I had FH and not the other way around.”

 

“So I started to put things together. I researched, formulated a hypothesis, and figured out I might have familial hypercholesterolemia (FH).” No one in her life had ever heard of FH.

Brianna knew she wanted a physician who was finally going to take her seriously. She made an appointment with a cardiologist at Emory University who helped implement the FIND FH® program in that health system – Dr. Danny Eapen.

“He said I was the first person who had come to him saying I had FH and not the other way around.” Dr. Eapen immediately connected Brianna with the Family Heart Foundation.

 

“I spent 29 years not treating my FH at all.”

 

“I was genuinely shocked that I’m getting my PhD in genetics and microbiology, but I didn’t know FH is the most common autosomal dominant genetic disease that there is.”

She points out that the genetic component to cholesterol and lipids is not often taught. “I understand they’re advocating for people to eat better and to exercise, but because of that, I think for years the genetic component has been glossed over.”

As Brianna has looked over her journey and the places where her condition could have been caught, she’s uncovered a passion for raising awareness and changing systemic problems. “If I had been a part of universal pediatric screening, I could have found this 2 decades earlier,” she says. “I spent 29 years not treating my FH at all.”

 

“If he had known more earlier, I could have had more time with him.”

 

Unfortunately, the next part of Brianna’s journey was not a happy one. On October 3, 2023, Brianna’s birth father had a heart attack and passed away three weeks after his 58th birthday.

“My birth father didn’t know anything about FH. He just knew he had high cholesterol and cardiac issues,” she explains. “I feel very grateful I got to meet him one time, but I just feel like if he had known more earlier, I could have had more time with him.”

This feeling motivated Brianna to join the latest class of Family Heart Ambassadors in our Annual Training in Amelia Island, Florida. “It’s been great meeting more people, sharing my story, and finding a platform to connect, advocate, and raise awareness. This is what I’m most passionate about now.”

Leave a Reply