Meet Tasia and learn more about what it’s like to grow up with FAOD.

Tasia is living with long-chain fatty acid oxidation disorder (LC-FAOD). As an infant, she was diagnosed with an enlarged heart five times as large and was immediately tested for multiple diseases, and shortly after, was diagnosed with very long chain acyl-co A deficiency (VLCAD), a form of FAOD. Tasia’s transitions into adolescence and adulthood were challenging because she experienced more symptoms as she got older. She admits that she was in denial at first, but she has learned to accept her condition and not let it define her. Tasia is proud to be a beacon of hope for young people living with a rare disease.

Long-Chain Fatty Acid Oxidation Disorder (FAOD)

What is it?

Long-chain fatty acid oxidation disorders (LC-FAOD) are a group of rare conditions that prevent the body from breaking down certain fats into energy.

What causes it?

The body typically uses glucose (sugar) for energy, but also gets energy from fat when it uses up available glucose. People with fatty acid oxidation disorders (FAOD) cannot use fat for energy.

What are some of the common symptoms?

  • Muscle rupture
  • Low blood sugar
  • Muscle weakness
  • Decreased muscle tone
  • Disease of the heart muscle

How many people have it?

It is estimated that 1 in 9,300 people in the U.S., Australia, and Germany have FAOD.1

Most common types of long-chain FAOD

  • Carnitine Palmitoyltransferase (CPT I or CPT II) Deficiency
  • Very Long Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency
  • Long-chain 3-hydroxy-acyl-CoA Dehydrogenase (LCHAD) Deficiency
  • Trifunctional Protein (TFP) Deficiency

1Lindner M, Hoffmann GF, Matern D. Newborn screening for disorders of fatty-acid oxidation: experience and recommendations from an expert meeting. J Inherit Metab Dis. 2010;33(5):521-526.

*These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan. If you would like to have your group added to the list, please contact patientadvocacy@ultragenyx.com.