Fabry Disease and Shoshin

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by Mary Chapman |

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A Japanese concept called shoshin might help people with diseases such as Fabry disease change their perspective and see their world, and their disorder, in a different light.

What is Fabry disease?

Fabry disease is a progressive and rare genetic disease. It results from the abnormal buildup of a type of fat called globotriaosylceramide (Gb3 or GL-3) inside cells and tissues. Gb3 accumulation can cause a wide range of symptoms, including chronic pain, kidney damage, gastrointestinal and cardiac issues, and hearing and vision problems.

What is shoshin?

The word shoshin comes from Zen Buddhism, and means “beginner’s mind.” It refers to keeping an attitude of openness and eagerness that is free of misperceptions, just as a beginner would in tackling a new task.

When you are a beginner, your mind is empty and open. You are willing to learn and consider lots of information. As you develop expertise and knowledge, however, your mind naturally becomes more focused and, often, more closed.

Applying shoshin to your daily life can help to bring back the childlike, curious nature that many of use tend to lose as we age. Ultimately, shoshin can give more meaning to life.

How can shoshin help me?

While there are no known studies specifically about shoshin and Fabry disease, a University of Zurich study looked into mind-body medicine in the context of treating chronic illnesses. Its states that seeing things with a beginner’s mind can be effective, usually when combined with conventional medicine, in helping people to handle the pain common to diseases like Fabry. The beginner’s mind approach may also help with other symptoms, such as headaches and cardiovascular disease, associated with Fabry.

Shoshin can also have a beneficial effect on stress and help lower anxiety, both of which Fabry patients are known to experience. If you’re anxious about an upcoming appointment or other event, instead of worrying about the outcome, let yourself be curious about what will happen, releasing preconceived notions and embracing the present.

Physicians can also practice shoshin if they wish to be more “present” and responsive to their patients and their particular needs.

How to rediscover your beginner’s mind

You can train your mind to employ shoshin during simple everyday activities, like having breakfast. Start by viewing what you’re doing (eating) with fresh eyes, as if you don’t know what to expect even though you’ve already done it countless times.

With the breakfast example, really examine the food, plate, and fork, and try to see details you wouldn’t ordinarily notice. Pay attention to the food’s tastes, textures, smells, and sights, as if you aren’t already familiar with them. Everything may start to seem new, maybe even full of wonder. You take nothing for granted and appreciate every bite as a gift that is fleeting and precious.

Whether you employ it at breakfast, while brushing your teeth, or doing the dishes, the practice allows you to return to the present so you can optimize your capacity to stop living  on auto-pilot, seeing more clearly and making conscious life choices.

Start by listening more closely while talking with others. Instead of sharing your own experiences, listen to other people’s ideas and achievements. See what you can take away from them.

Why shoshin matters

When you are living with limitations, it can at times feel as though you aren’t moving forward with life. Practicing shoshin can help by making each day’s experiences more real and worthwhile. You may be more open if you aren’t hampered by preferences  or prejudgments about how things should be. Such an outlook also can help with feelings of disappointment and frustration.

If you’re procrastinating about a big task, instead of fretting about how hard it will be or how you might fail, be curious about what the task will be like. Pay attention to the details of performing the task, rather than trying to avoid them.

Learning to become more aware of yourself and your mind can help in keeping you open to new ideas, and more positive and effective ways of thinking.


Last updated: Feb. 19, 2021


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.