Meet Tasia and learn more about what it’s like to grow up with a long-chain fatty acid oxidation disorder (LC-FAOD).

Tasia is living with an LC-FAOD. As an infant, she was diagnosed with an enlarged heart and was immediately tested for multiple diseases. Shortly after, she was diagnosed with very long chain acyl-co A deficiency (VLCAD), a type of LC-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.

When you live with a rare disorder like an LC-FAOD, it can feel lonely. Check out this video from LC-FAOD community members around the world to hear their experiences and how they manage the condition day to day.

Long-chain Fatty Acid Oxidation Disorders (LC-FAOD)

What is it?

Long-chain fatty acid oxidation disorders (LC-FAOD) are a group of rare conditions that impair the body’s metabolism from breaking down certain fats from food 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 efficiently use fat for energy.

What are some of the common symptoms?

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

How many people have it?

It is estimated that 2,000 to 3,500 people are living with LC-FAOD in the U.S.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

Learn how Ultragenyx is moving LC-FAOD research forward with patients and families

Ultragenyx Opportunities to Participate

Research plays a critical part in advancing science and treatments. Volunteers who participate in this research are essential. Future therapies would not be possible without them. Participating in clinical trials, interviews, observational studies, and disease monitoring programs help to drive research, treatment development, and disease education. It is also a way to advocate for yourself and your community. To learn more about Ultragenyx research, email [email protected].

1Ultragenyx Pharmaceutical Inc. Data on file. 2019.

*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 [email protected].