Living With LC-FAOD

Woman who typifies a caregiver with a child who typifies a person with LC-FAOD

Rare Care and Everyday Life

Monitoring and Supervision

The disease demands families and caregivers to immediately establish and closely follow a specific diet and monitor physical activity.

  • Care of individuals with LC-FAOD may require an around-the-clock commitment to check for signs and symptoms of deterioration and/or fatigue.
  • The management of caloric intake, avoidance of fasting (including overnight), and potential monitoring/maintenance of enteral feeding tubes may result in restrictions on time and freedom.

Health-related Quality of Life Issues

A person’s quality of life may be substantially diminished as a result of LC-FAOD.

  • Physical, mental, emotional, and social functioning are negatively impacted.
  • Factors that may lead to anxiety and depression include:
    • Continual avoidance of triggers (exercise, exposure to viral illness, cold or hot weather)
    • Risk of symptom recurrence
    • Uncertainty or fear about the long-term impact of LC-FAOD

If you are experiencing any of these issues, seek the help and guidance of a trained medical professional.

Another woman who typifies a caregiver with a child who typifies a person with LC-FAOD

If you are experiencing any of these issues, seek the help and guidance of a trained medical professional.

How is LC-FAOD impacting you or your child's life?

CPT I • CACT • CPT II • VLCAD • TFP • LCHAD

Take this quiz to find out.

This quiz will help you monitor LC-FAOD symptoms and identify topics to discuss with your LC-FAOD healthcare team. Complete it before each visit to see how your answers may change over time.

This quiz is provided as a tool to help you prepare for healthcare visits. Your responses are not stored or used for any purpose.

If you prefer to fill out the quiz on paper, download it here.

Contact your healthcare team if any symptoms are concerning to you.

Question 1

How often do you (or your child) limit or avoid daily activities due to symptoms of LC-FAOD?

Did you know?

In LC-FAOD, when the body can’t supply enough energy to meet its needs, people may develop chronic symptoms or experience acute episodes following moderate exercise. Some people start to avoid exercise in order to avoid triggering LC-FAOD symptoms.

Question 2

Are you (or your child) experiencing any of the following symptoms of LC-FAOD?

CHRONIC SYMPTOMS

ACUTE SYMPTOMS

Are the symptoms affecting one or more specific parts of the body?

Check all that apply or click the locations on the image of the body.

Did you know?

Chronic symptoms of LC-FAOD develop over time and may worsen over months to years. They can be brought on or made worse by fasting or illness, sustained exercise, and physiologic stress.


Acute symptoms of LC-FAOD develop suddenly. They usually appear during an illness or if you have skipped a meal, but they may also occur spontaneously or unpredictably.

Question 3

Are there any other potential chronic or acute symptoms of LC-FAOD that you’d like to talk about with your LC-FAOD healthcare team?

Did you know?

LC-FAOD can cause a wide variety of symptoms that usually affect organs that use fat as a major energy source, such as the liver, heart, muscles, and eyes. People with LC-FAOD may not experience symptoms in all of these organs, and they may experience different symptoms at different times.

Question 4

How often do you typically meet with your LC-FAOD healthcare team?

How recently have you met with your LC-FAOD healthcare team?

Have you (or your child) experienced any additional issues or challenges while living with LC-FAOD?

Did you know?

Keeping your healthcare team informed about new or worsening symptoms and how LC-FAOD is impacting your (or your child's) daily life can help you navigate LC-FAOD together.

Question 5

Reflecting back on your last several visits with your healthcare team, is there anything else you wish you had shared with them about living with LC-FAOD? (optional)

List any additional questions or notes to discuss with your healthcare team at your next appointment. (optional)

This quiz is provided as a tool to help you prepare for healthcare visits. Your responses are not stored or used for any purpose.

Thank you for completing this quiz.


The answers you’ve provided may help guide your discussion with your LC-FAOD healthcare team.

Please download a PDF of your answers and remember to bring it to the next appointment.


Learn how to take care of yourself while caring for someone with LC-FAOD

Living Well While Caring For Someone With LC-FAOD

Taking care of yourself is as important as taking care of someone living with LC-FAOD

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Take advantage of resources that provide additional insights and tips on caring for people with LC-FAOD

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