Warning Signs of Depression in Pompe Disease

Experiencing the symptoms of Pompe disease, a rare genetic disorder resulting in muscle weakness, fatigue, developmental delays, breathing difficulties, and heart problems, can have a profound psychological impact on patients and may even lead to depression.

Pompe, characterized by the buildup of a type of sugar called glycogen within the cells and tissues of the body, causes symptoms of varying severity that can affect daily activities and interactions with others. Living with these symptoms can have a negative psychological effect on people with the disease.

Here are a few tips to identify warning signs of depression in individuals diagnosed with Pompe disease.

Look out for signs of inactivity

Family, friends, and caregivers of people with Pompe should be vigilant about reduced physical activity or an unwillingness by patients to perform simple common tasks. If the individual is indifferent or averse to any physical activity, this could be an early sign of depression. Remember that an active lifestyle is needed to combat stress and manage fatigue associated with Pompe disease, so consult a doctor at the earliest for advice about ways to ensure the patient is as active as possible.

Reluctance to continue therapy

Enzyme replacement therapy (ERT) is currently the only approved and effective treatment for Pompe disease and must be taken at regular intervals without fail. If you notice that the patient is not complying with therapy, bring it to the doctor’s attention immediately.

Signs of increased irritability and recklessness

Getting frequently agitated and have a low tolerance for insignificant issues may be a sign of depression. This can lead to reckless behavior, which can cause harm both to self and to others. It is important to let a doctor know as soon as possible.

Changes in appetite

A depressed person can have either increased or decreased appetite, both of which can be detrimental in the case of Pompe. Diet plays an important role in helping manage disease symptoms, so it is important that food intake is monitored. A weight loss or gain of more than 5% of body weight in a month could be a sign of depression.

Sleep disorders

Sleep disorders such as insomnia, a lack of sleep, or hypersomnia, excess sleep, also may be signs of depression. Therefore, monitor for changes in sleep patterns and inform a doctor at the earliest if you notice anything amiss.

Low productivity at work

Depression can take a toll on concentration and overall productivity at work. If you or someone you know with Pompe is showing reluctance to work, it could be an indicator of depression. It’s important for the individual with Pompe to talk to the human resources department of the organization as early as is possible so that necessary accommodations can be made.

Those with Pompe who are dealing with depression can try to work around the situation by considering options such as reduced work hours, changing shifts, or pursuing work from home. Having a goal-based approach and setting boundaries while at work, both for the patient and for others, also can help.

Excessive dependence on smoking and alcohol

Increased reliance on smoking or alcohol could be a sign of depression. Excessive alcohol consumption can itself worsen symptoms of depression and promote violent behavior, as well as causing liver and heart problems.

Suicidal tendencies

If depression is severe, the individual may have a feeling of despair and hopelessness that can result in suicidal tendencies. If you find that a Pompe disease patient is pessimistic about his or her life, consult a doctor or a psychologist immediately or contact the national suicide prevention lifeline.

Last updated: Feb. 21, 2020

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