Living With LC-FAOD

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

Rare Care and Everyday Life

LC-FAOD Self-Care Assessment  

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 LC-FAOD is impacting you and your child graphic

How is LC-FAOD impacting you or your loved one’s life?

Take this assessment to find out and to identify topics to discuss with your healthcare team.

This LC-FAOD Self-Care Assessment 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 LC-FAOD Self-Care Assessment 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 LC-FAOD Self-Care Assessment on paper, download it here.

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

How LC-FAOD is impacting you and your child graphic

Activity and Symptoms

Patient Name
Date
How is LC-FAOD impacting you or your loved one’s life?
Take this assessment to find out and to identify topics to discuss with your healthcare team.
Contact your healthcare team if any symptoms concern you.

Are you/your loved one happy with your/their current level of activity?

Avoiding daily activities due to LC-FAOD graphic

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.

Activity and Symptoms - Continued

Are you or your loved one missing, avoiding or limiting physical activities (i.e. walking, exercise, social activities, school, work, etc.)?

If so, which ones?

How often?

Experiencing chronic LC-FAOD symptoms graphic

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.

Activity and Symptoms - Continued

Are you/your loved one experiencing any of the following symptoms?

Check all that apply

Ongoing/Always (Chronic) Symptoms

Occasional/Sometimes (Acute) Symptoms

When do you/your loved one experience these symptoms?

Check all that apply

Symptoms last for

Check all that apply

Are any of these symptoms new or have they recently changed?

Explain further

Organs affected by LC-FAOD graphic

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.

Activity and Symptoms - Continued

How would you rate your recent pain level?

Min pain

Max pain

Did you know about LC-FAOD graphic

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.

Activity and Symptoms - Continued

What typically triggers these symptoms?

Check all body parts affected.

Please specify

Clinical Follow Up

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

(i.e., dietitian, genetic counselor, nurse, metabolic geneticist, other physician, etc.)?

Clinical Follow Up - Continued

Do you have an appointment scheduled?

Date of next appointment

Are you seeing any other specialists?

Please specify

Preparation for Discussion

Have you/your loved one experienced any other issues or challenges

(social situations, mental health, school, workplace issues, etc.) while living with LC-FAOD?

Please describe

Preparation for Discussion - Continued

Thinking back on your last several visits with your healthcare team, what else would you like to share about living with LC-FAOD?

Preparation for Discussion - Continued

Are there any life goals you have that LC-FAOD has limited you from achieving? List any additional questions or issues to discuss with your healthcare team

This LC-FAOD Self-Care Assessment 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 LC-FAOD Self-Care Assessment.


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

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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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