Fabry disease and mental health

Last updated Sept. 23, 2024, by Cathy Garrard
Fact-checked by Patrícia Silva, PhD

Living with Fabry disease can take a toll on your mental well-being.

Fabry is a progressive genetic disorder caused by mutations in the GLA gene. Men are more commonly diagnosed with this condition.

Dealing with Fabry disease symptoms — including pain, and skin and gastrointestinal issues — can lead to mental health problems such as depression and anxiety. A 2022 review study estimated that up to 60% of people with Fabry experience depression. But there are ways to help support your mental health.

Growing up with Fabry disease

There are two types of Fabry disease. Classic Fabry tends to be diagnosed in childhood, while late-onset Fabry disease is usually diagnosed after age 30 and has milder symptoms.

Dealing with a progressive disease like Fabry, especially from a young age, can be emotionally draining. It can be particularly challenging before you have a diagnosis and are unsure what is happening with your body. But it’s normal for people who develop it at any age to experience a range of emotions, including fear, frustration, and anger.

Starting treatment to manage disease symptoms and complications — such as pain and tingling in hands and feet, vision changes, and gastrointestinal problems — can be empowering. You may begin to feel more in control of both your body and your emotions.

It’s also important to learn how to communicate with others about your disease and not be reluctant or embarrassed about asking for help.

Depression

Depression is a serious clinical disorder that can impact quality of life for those living with Fabry disease. It can affect how you think, feel, and function on a daily basis.

The National Institute of Mental Health website notes that depression can include:

• a persistent feeling of sadness, hopelessness, frustration, guilt, or pessimism
• loss of interest in activities you enjoy
• fatigue or lack of energy
• difficulty concentrating
• sleep problems
• changes in appetite, or weight loss or gain
• aches and pains, headaches, or digestive problems
• thoughts of death or suicide attempts.

Treatments available for depression include antidepressant medications, therapy, and support groups.

Anxiety

Anxiety is a feeling of fear, dread, and uneasiness. People with Fabry disease may experience anxiety alone or along with depression.

Anxiety can be ongoing and hard to deal with, making it difficult to function beyond any of the physical limitations from having Fabry.

Anxiety symptoms, according to the MedlinePlus, may include:

• anxious thoughts that are hard to control and worsen over time
• rapid heartbeat
• unexpected aches and pains
• dizziness and shortness of breath
• behavioral changes, such as avoiding activities you enjoy.

Anxiety, like depression, can be treated in several ways. Therapies may include medication, psychotherapy, relaxation techniques like meditation, massage, or acupuncture, and dietary changes.

Daily coping strategies for easing anxiety and depression

According to the Anxiety & Depression Association of America, there are techniques to help with the management and prevention of these two debilitating mental health conditions, including:

• trying relaxation techniques, such as yoga, meditation, deep breathing, and massage
• following a low-fat diet for gastrointestinal problems like abdominal pain and diarrhea
• limiting consumption of alcohol and caffeine
• accepting what you can and cannot do
• getting enough sleep
• exercising if approved by a healthcare professional
• talking to friends, family, or a therapist
• volunteering, such as to support Fabry advocacy and awareness.

Counseling and therapy

Depression and anxiety can be treated by a range of healthcare professionals, including psychologists and psychiatrists.

Psychotherapy, also known as talk therapy, is a type of counseling that helps you recognize and change your unhealthy thoughts. One type of psychotherapy, known as cognitive behavioral therapy, teaches you strategies on how to better react to situations that trigger your feelings of anxiety or depression.

Psychotherapy can also be an effective treatment for children and families of those with Fabry disease who may be struggling with caregiving and looking for additional support.

Support groups

Connecting with Fabry disease support groups can be empowering and help you stay updated on research and treatments. It is also a way to find resources such as healthcare professionals and meet other people who are affected by this disease.

For those with Fabry disease who are struggling with mental health issues, there are several groups that provide Fabry disease support, including:

• Fabry Support and Information Group
• National Fabry Disease Foundation
• Fabry International Network
• Canadian Fabry Association
• Fabry Connect.

Fabry Disease News has a Facebook page where people with Fabry can interact with one another. It also offers the latest news and columns from people living with Fabry.

Lifestyle changes

Making healthy tweaks to your regular routine can help you manage your emotions. Staying in touch with friends and family, practicing relaxation techniques, and working with a mental health professional can help you feel more empowered.

Other lifestyle changes to consider trying to improve your mood and mental health include:

• managing gastrointestinal symptoms by eating smaller meals and a balanced diet
• working with a healthcare professional to create a modified exercise routine that takes into account fatigue and physical pain
• following a treatment plan tailored to your specific symptoms.

What to do in a mental health emergency

A mental health emergency or crisis is when a person’s thoughts and behaviors interfere with their ability to function on a daily basis. There may also be signs that they might want to harm themselves or others.

The American Psychological Association says one of the most common signs of a mental health crisis is “a clear and abrupt change in behavior.”

Watch for warning signs of a mental health crisis, including:

• intense mood changes
• inability to do daily tasks
• ignoring hygiene
• being agitated, angry, or violent
• self-medication or self-harm
• withdrawal from social interactions
• paranoia
• hallucinations or delusions
• suicidal thoughts.

To find crisis intervention services, you may want to go to a psychiatric urgent care or a hospital emergency department, or call 911.

When there is an immediate need for medical help or you think someone is in danger, call 911. Say that a mental health crisis is happening to help ensure that you are connected with the appropriate service, such as a crisis intervention team.

Suicidal ideation is when someone is thinking about or making plans to end their life. It may include thoughts and behaviors such as:

• looking for ways to die
• engaging in self-destructive behavior
• talking about suicide
• feeling like there’s no reason to live
• experiencing guilt and shame
• withdrawing from family and friends
• displaying excessive anger
• suddenly writing a will
• giving away possessions.

These are serious signs of a person having an acute mental health emergency.

If you think you are having suicidal thoughts, you can get help from a crisis line to speak or text with a counselor.

• In the U.S., call 988 Suicide and Crisis Lifeline at 800-273-8255 or dial 988.
• Military veterans can reach the Veterans Crisis Line by dialing 988 and pressing 1.
• Text the Crisis Text Line at 741741 in the U.S.
• Find international, country-specific crisis text lines here.
• International, country-specific crisis hotlines can be found at Suicide Stop and Befrienders Worldwide.

Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.