Betty Jo Familial Hypercholesterolemia (FH) Story

Betty Jo’s Story

You’re the Only One Who Will Speak Up for Your Child

Betty Jo’s husband went on cholesterol-lowering treatment when he was in his thirties. “It was the usual ‘high cholesterol runs in the family’ story,” she explains. The two got married, started having children, and lived their lives.

Their family continued to grow with no problems until their youngest daughter was labeled “failure to thrive.” She was very tiny and not growing so she was sent to specialists including Dr. Wilson at Cook Children’s Medical Center in Fort Worth, Texas.

“He decided to run a bunch of tests to determine why she was so small, and one was a cholesterol test,” explains Betty Jo. That test came back high, very high. Their small daughter’s untreated low-density lipoprotein (LDL) was 388 mg/dL. She was diagnosed with familial hypercholesterolemia (FH).

Step one was getting their daughter on cholesterol-lowering treatment. She started a statin and responded well.

“I was so concerned; I think they finally tested my other kids to shut me up.”

Step two for Betty Jo was getting the rest of her children tested. “If my husband has it, and our youngest daughter has it,” she explains, “then I wanted to see if the other children had it. When I asked, the pediatrician said there was no need because usually there aren’t any cholesterol issues in kids.”

Betty Jo didn’t accept that answer. She pushed for the kids to be tested. “I got the run-around,” she said, “and I think they finally tested my other kids just to shut me up.”

Sure enough, two of her other children have high cholesterol. One had an untreated LDL level of 188 mg/dL and the other’s was 222 mg/dL. The family is pursuing treatment options for these kids.

“You have to be persistent.”

Betty Jo understands the importance of early diagnosis and treatment. “My thought is, if this is preventable with a medication that their bodies can handle, then we should do it.”

After her experiences, Betty Jo decided to become a Family Heart Foundation Advocate for Awareness. “When my daughter was diagnosed, I knew I needed to dig into this organization to help people and pediatricians become more aware.”

She’s worked as an Advocate for Awareness and an advocate for her children. “You have to be persistent,” she explains, “because you’re the only one that’s going to speak up for your child.” She recognized that this story was about more than her one daughter – it was about her whole family. Family screening helped identify her other children and get them on the path to early treatment.

Betty Jo M. is a Family Heart Foundation Advocate for Awareness. If you're interested in joining the Family Heart Foundation as an Advocate click here to learn more.

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