FAP and mental health

Last updated Nov. 27, 2024, by Susie Strachan
Fact-checked by Marta Figueiredo, PhD

Being diagnosed with familial amyloid polyneuropathy (FAP), a rare progressive and potentially life-threatening condition, may affect your mental health in addition to the disease’s effects on your physical health.

Coping with FAP symptoms — such as abnormal sensations, muscle weakness, pain, vision problems, changes in involuntary bodily functions, and heart issues — and the uncertainty of having a progressive disease can all take a toll.

But you don’t have to navigate mental health challenges like anxiety and depression by yourself.

Whether through counseling, FAP support groups, lifestyle changes, or talks with your FAP healthcare team, resources focused on FAP mental health are available to help you manage your emotional well-being.

If you’re struggling with your mental health, reach out — you’re not alone on this journey.

Accepting your diagnosis

FAP is a type of hereditary ATTR amyloidosis, or hATTR, a group of inherited diseases marked by the accumulation of toxic clumps (amyloids) of a protein in the body’s tissues.

The condition is caused by genetic mutations that can be passed from parents to their biological children. If your doctor suspects you or your child may have FAP, the diagnosis will be confirmed through genetic testing.

An FAP diagnosis can be overwhelming. You may be concerned about how it will affect your family and work, and what changes you may need to make in your daily life.

You may also experience sadness, fear, and grief. For some, all these feelings may lead to anxiety and depression, which have been reported to affect more than half of people with FAP, as well as more than one-third of individuals with a confirmed diagnosis but not yet showing symptoms.

To help you feel like you have more control over your condition, start by discussing your FAP treatment options with your healthcare team. You may want to ask about medications that may help manage symptoms or treatments that potentially can slow disease progression.

Learning about FAP — its causes, treatments, and potential complications — can be empowering and may help demystify the disease so you can make more informed decisions about living with FAP.

Anxiety

Dealing with the symptoms of the disease, worrying about them getting worse, and wondering whether they’ll make you dependent on others, along with witnessing FAP’s possible effects on other family members, can cause FAP-related anxiety.

Symptoms of anxiety can include feelings of fear, dread, and uneasiness, as well as concentration problems, restlessness, and difficulty sleeping. These symptoms can eventually affect your daily life.

If you have feelings of anxiety, ask your healthcare providers for recommendations to a mental health therapist for counseling.

Other ways to lessen anxiety include:

• talking with friends and family for support
• trying relaxation techniques, such as meditation or deep breathing
• practicing mindfulness because focusing on the present moment can reduce anxiety about the future
• breaking tasks into manageable steps to give you a sense of accomplishment and reduce feelings of being overwhelmed
• participating in hobbies you enjoy
• writing down your thoughts and emotions.

Depression

When anxiety about living with FAP is ongoing, it can cause chronic stress. Over time, feelings of hopelessness and negativity can contribute to developing depression.

Depression is marked by a persistent feeling of sadness and loss of interest or pleasure in activities over at least two weeks.

Signs of depression can include:

• feelings of sadness and hopelessness
• inability to enjoy things and activities that used to bring joy
• inability to sleep
• changes in appetite
• lack of energy
• problems focusing at work
• suicidal thoughts.

If you think you are depressed, reach out to:

• healthcare professionals, such as your family doctor
• a psychotherapist or counselor
• support groups, either online or in-person
• crisis hotlines, such as calling or texting 988.

Counseling and therapy

Mental health counseling and therapy is one of the complementary support therapies for FAP, along with occupational therapy and physiotherapy, or physical therapy.

A therapist can help you develop coping strategies for managing stress and anxiety. Mental health professionals also can show you techniques for relaxation and mindfulness, and provide a safe space to talk about your fears and concerns.

Counseling and therapy services vary in how they approach mental wellness:

• Talk therapy, or psychotherapy, helps you explore and understand your thoughts, emotions, and behaviors.
• Acceptance and commitment therapy, in which individuals learn to accept their circumstances, may help you see your situation in a different context.
• Cognitive-behavioral therapy, or CBT, tries to identify and change negative thought patterns and behaviors.
• Mindfulness-based interventions use meditation and breathing exercises to allow you to focus on the present moment and reduce stress.

Online therapy offers convenience and flexibility, especially if you live in a remote area or have mobility limitations. Or, you may find you prefer in-person therapy.

Support groups

Joining an in-person or online FAP support group can help you address feelings of loneliness and isolation, as well as depression and anxiety.

Support groups can also provide valuable resources for you and your loved ones in terms of information, emotional support, and coping skills. Additionally, a support group may help you stay motivated to manage your FAP symptoms and maintain a regular routine.

To locate a FAP support group, ask your healthcare team for recommendations, or check if a clinic or hospital near to you offers a FAP patient support group.

National and international organizations that offer support groups include:

• Amyloidosis Foundation
• Amyloidosis Support Groups
• Amyloidosis Research Consortium.

You can also find support groups for FAP through social media platforms, such as Facebook. These groups include:

• hATTR-Hereditary-FAP-FAC
• Amyloidosis Awareness.

FAP News Today also offers a Facebook page, where topics such as mental health and FAP news are covered.

Lifestyle changes

Having FAP and depression or anxiety can seem challenging, but lifestyle changes can help you cope when you choose strategies that work for you.

One helpful strategy is to create a regular routine that you can adapt depending on how you are feeling. You might also try:

• using assistive devices like canes, walkers, or wheelchairs to provide stability and decrease the risk of falls
• practicing mindfulness, such as meditation or deep breathing
• setting time aside for self-reflection to identify needs and goals
• getting enough sleep and taking naps as needed to maintain energy levels
• setting aside time every day to do something you enjoy such as seeing friends, watching a movie, reading, or being outside
• petting a companion animal.

What to do in a mental health emergency

When feelings of distress become overwhelming and current coping methods don’t work, a person may experience a mental health crisis or emergency.

According to the American Psychological Association, warning signs of a mental health crisis include:

• noticeable and sudden changes in behavior
• feeling increasingly agitated, angry, or violent
• self-medication or self-harm
• hallucinations or delusions
• paranoia
• suicidal thoughts.

It’s important to have a plan in place so you know who to reach out to in case of a mental health crisis. Work with a mental health professional to create a crisis plan specific to your needs, with steps to follow, emergency contacts, and coping strategies.

If you or someone else is in immediate danger, experiencing severe emotional distress, or having thoughts of self-harm or suicide, call 911 in the U.S. or Canada, or your local emergency number.

When calling 911, you should state you are experiencing a mental health crisis so you can be connected to the appropriate service, such as a crisis intervention team.

Many countries have crisis hotlines staffed by trained professionals who can provide immediate support.

• In the U.S., call the 988 Suicide and Crisis Lifeline at 988 or 800-273-8255.
• Military veterans can reach out to the Veterans Crisis Line by dialing 988 and pressing 1.
• In the U.S. and Canada, send a text to the Crisis Text Line at 741741.
• In Canada, call 988.
• Internationally, find country-specific crisis text lines.
• Internationally, look for country-specific crisis hotlines at Suicide Stop or Befrienders Worldwide.

Even after the immediate crisis has passed, consider follow-up care with a mental health professional to address any underlying issues and develop plans to prevent future crises.

You also should discuss with your FAP healthcare team prevention strategies for mental health issues as part of your overall treatment plan.

FAP News Today 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.