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Fabry Disease: Caring for Your Mental Health

Reviewed by Brunilda Nazario, MD on April 19, 2021

The physical symptoms of Fabry disease may be easy to see. Less obvious are the effects this long-term illness can have on your mental health. If you feel sad, anxious, or overwhelmed, your doctors and mental health professionals have treatments to help you feel better.

How Fabry Disease Can Make You Feel

Fabry disease might make you feel anxious for a number of reasons. For one thing, it can take years of tests just to find out whether you have this condition. And repeatedly hearing that your symptoms have no answer or that they aren't real can make you feel like no one takes you seriously. Then, when you finally do get diagnosed, the anxiety that can come with having a chronic disease can set in.

It can also be stressful to know that you have a disease that could get worse over time. It could put a strain on relationships with family members and friends, who may not know how to react. You might get depressed or develop other mental health issues.

Reach out to your family and friends for support and talk to your doctor to get the help you need to manage any mental health challenges you face.

Depression Warning Signs

Anxiety and depression are real symptoms. They're just as real as the pain and skin rashes that Fabry disease causes. And none of these symptoms will improve if you ignore them.

See your doctor if you have symptoms of depression, which can include:

  • Sadness or hopelessness
  • Loss of interest in activities you once enjoyed
  • Sleeping too much or too little
  • Lack of energy
  • Anxiety or restlessness
  • Slowed thoughts, speech, or movements

Getting relief from these symptoms starts with a conversation. Let your doctor know how you feel. See which therapies are available to you.

One thing your doctor can do is start you on enzyme replacement therapy (ERT). ERT improves pain and other symptoms of Fabry disease, which can help you feel better and get back to your normal life.

If depression and other mental health symptoms don't improve with this treatment, your doctor might refer you to a psychologist or counselor for depression screening.

Talk to a Mental Health Professional

A counselor, psychologist, or therapist can help you talk through the anxiety, sadness, and other negative emotions you feel. Research shows that people with Fabry disease who get counseling have less depression, which can improve their quality of life and reduce pain.

For more severe anxiety or depression, you may need to see a psychiatrist. This doctor can prescribe medications like antidepressants and anti-anxiety medicines.

If you can't visit a mental health professional in person, many of them offer telehealth visits.

Visit a Social Worker

Uncertainty and worry about your disease or how to pay for its care can weigh you down. Find out whether your local hospital or clinic has a social worker who can guide you through your treatment and ease some of these worries.

A social worker can:

  • Give you information to help you understand your disease better.
  • Offer advice on health insurance and other financial issues.
  • Recommend transportation services and other resources in your area.

Find Support

The people closest to you can also help you manage your disease. When you need help with everyday tasks or you just want to talk to someone, start with your family, spouse or partner, and friends. Studies show that people with Fabry disease who have a good support system have less depression and pain.

You can also look outside your inner circle for support. A few organizations offer support groups for people with Fabry disease and their families. Check the websites of these organizations:

  • Fabry Support & Information Group
  • National Fabry Disease Foundation
  • Fabry International Network

Support groups are held in person and online. At these sessions, you'll meet other people with Fabry disease, which can help you feel less alone. The other members of the group may have advice to help you live better with your disease. They can also give you an emotional boost when you feel down.

WebMD Medical Reference

Sources

SOURCES:

Archives of Clinical Neuropsychology: "Cognitive and Psychological Functioning in Fabry Disease."

JIMD Reports: "Treatment of Depression in Adults with Fabry Disease."

Journal of Genetic Counseling: "Fabry disease practice guidelines: Recommendations of the National Society of Genetic Counselors."

Orphanet Journal of Rare Diseases: "Depressive symptoms in Fabry disease: the importance of coping, subjective health perception and pain."

Mehta, A. Fabry Disease: Perspectives from 5 Years of FOS, 2006.

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