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Familial Hypercholesterolemia (FH): Inherited High Cholesterol in Children

Pediatric Preventive Cardiology

Familial Hypercholesterolemia (FH): Inherited High Cholesterol in Children

Familial hypercholesterolemia (also called FH) is a genetic disorder that results in severe high levels of blood cholesterol and an increased risk of early heart disease (defined as starting in men before age 55 and in women before age 65).

FH is caused by changes in a gene that lowers the body's ability to remove low-density lipoprotein (LDL) cholesterol (the "bad" cholesterol) from the blood. This makes the levels of LDL cholesterol very high.

FH is inherited. In most types of FH, a parent with FH has a 50% chance of passing the gene that causes FH to their child. If someone is found to have FH, their parents, siblings, and children should also have their cholesterol checked. Children with LDL cholesterol over 160mg/dL may have FH.

About Familial Hypercholesterolemia (FH)

Why and When Should I Have My Child's Cholesterol Checked?

Many parents wonder why their child's cholesterol needs to be checked. The American Academy of Pediatrics (AAP) and the National Heart, Lung, and Blood Institute (NHLBI) recommend: All children have cholesterol checked between the ages of 9-11, and again between the ages of 18-21. Learn the reasons why

From the American Family Children's Hospital "Growing Up Healthy" blog: Why Should I Get My Child's Cholesterol Checked?

Lifestyle Factors

Fitness, Screen Time and Healthy Eating

FH Registry

The Pediatric Preventive Cardiology Clinic at American Family Children's Hospital is proud to be a part of the CASCADE-FH (CAscade SCreening for Awareness and DEtection of Familial Hypercholesterolemia) Registry. This registry's goal is to promote understanding of FH, examine gaps in care for those living with FH and improve adherence to guideline-recommended treatments for FH. Enrollment in this registry is by patient/parent consent. Learn more about the CASCADE-FH Registry

Information for Referring Providers

Consider referral for evaluation in the Pediatric Preventive Cardiology Clinic if a child has:

  • Documented dyslipidemia, diagnosed by fasting lipid panel. This includes any of the following:
    • HDL < 45 mg/dL
    • LDL > 110 mg/dL
    • Total cholesterol > 170 mg/dL
    • Triglycerides ≥ 100 mg/dL ages 0-9; ≥ 130 ages 10-19
    • Please see the Lipids and Lipoproteins section of the NHLBI's Pediatric Cardiovascular Risk Reduction Guidelines for more information.
  • Children who are medically complex with cardiovascular risk factors and/or dyslipidemia
  • The child uses tobacco, desires to quit
  • The child has other cardiovascular risk factors that are concerning to parents or health care providers. It might be helpful to call the Pediatric Preventive Cardiology Clinic to discuss concerns prior to referral.
  • Urgent referral guidelines: LDL >190 mg/dL , TG > 500

Cholesterol Screening for Children (pdf)

Referrals and Urgent Referrals

  • To refer a patient, call (608) 263-6420
  • For urgent referrals, contact the UW Health Access Center at (608) 263-6796 or (800) 472-0111