Ora's FH Story

90% of individuals with Familial Hypercholesterolemia are not diagnosed

Familial hypercholesterolemia (FH) is a common life-threatening genetic condition that causes high cholesterol. Untreated, FH leads to early heart attacks and heart disease.*

Unfortunately, today only 10% of individuals with FH are diagnosed. Lack of awareness and understanding of in the medical community and public at large leave entire generations of families at risk.

Ora didn't have to lose her family to heart disease

Ora lost her father to a heart attack when she was only six. When pregnant at 20, she learned she had dangerously high cholesterol. Even though she began treatment, no one gave her a name for her condition.

Ora watched her brother pass away from a heart attack at 44. As the years passed, she saw her siblings and several other family members die of heart disease. It wasn’t until open heart surgery at the age of 57 that Ora finally discovered what she and her family had been fighting for so many years - familial hypercholesterolemia.

After so much heartbreak, the unimaginable happened. Ora’s son, Chawn, died suddenly from a heart attack at 38 years old. It was then that Ora reached out to the FH Foundation where she was connected with resources and support. Ora trained to become an FH Advocate and build awareness so that other families like hers, who have suffered for decades, don’t have to lose their loved ones to undiagnosed familial hypercholesterolemia.

Genetic high cholesterol

People with FH have a high amount of low density lipoprotein (LDL) or “bad cholesterol” due to a mutation in one of the genes that controls the way cholesterol is cleared by the body. As a result, cholesterol accumulates in the bloodstream and can ultimately build up in the walls of the arteries. Cholesterol build up in the artery wall is called hardening of the arteries, or atherosclerosis, and can lead to problems such as heart attacks and strokes in young adults and even children. FH is inherited and passed down through families.

When one individual with FH is diagnosed, it is important that all family members are screened for FH. Treatment should begin early. Although lifestyle and diet are important factors to staying heart healthy, for individuals with FH, that is not enough.

Diagnosing FH

Diagnosing FH

FH can be diagnosed with a simple test and family history.

How FH is Diagnosed
Treating FH

Treating FH

Treatment for FH begins with medicine, along with a heart healthy diet.

Treating FH
Finding an FH Specialist

Finding an FH Specialist

We can help you find an FH specialist through a searchable database.

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