Mindfulness for People Living With aHUS

It can be challenging to live with a rare and chronic disease like atypical hemolytic uremic syndrome (aHUS). Using a tool called mindfulness can help you cope with the stress that often accompanies these challenges.

What is mindfulness?

Mindfulness is the practice of being constantly aware of your thoughts, feelings, sensations, and environment. Rather than rehashing the past or imagining the future, mindfulness means embracing what is sensed at the moment.

The Institute for Mindfulness-Based Approaches, which offers a stress-reduction program on intensive mindfulness training, teaches that while you can’t always change your situation, you can choose your response to it. By being in touch with present thoughts, sensations, and emotions, you can gain a different perception of what you’re going through.

Mindfulness isn’t an instant remedy for life’s ills, but it is a tool to help you deal with them more calmly and sensibly.

How can mindfulness help me?

While there are no known studies specifically about mindfulness and aHUS, an investigation involving people with other chronic disorders showed that mindfulness can be beneficial to patients’ mental health and outcomes.

A systematic review of studies that focused on patients with a variety of chronic illnesses also indicated that mindfulness-based stress reduction — a meditation therapy originally designed for stress management — improved patients’ overall state, helping them cope with a broad range of clinical problems.

A more recent study indicated that people who meditated for eight weeks had a marked change in the expression of 172 genes that regulate inflammation, sleeping patterns, and glucose metabolism. Their high blood pressure also dropped.

Examples of structured mindfulness

Examples of structured mindfulness include body scan meditation, breathing meditation, and walking meditation.

Body scan meditation

Lie on your back with your legs extended and arms at your sides, palms facing up. Focus your attention slowly and deliberately on each part of your body, moving from toe to head or head to toe. Become aware of any sensations, emotions, or thoughts associated with each part of your body.

Sitting meditation

Sit comfortably with your back straight, feet flat on the floor, and hands in your lap. Breathing through your nose, focus on your breath moving in and out of your body. If physical sensations or thoughts interrupt your meditation, note the experience and then return your focus to your breath.

Walking meditation

Find a quiet place 10 to 20 feet (three to six meters) in length and begin to walk slowly (unless you’re experiencing shortness of breath or fatigue). Focus on the experience of walking. Be aware of the sensations of standing and the subtle movements that keep you balanced. When you reach the end of your path, turn around and continue walking, maintaining awareness of your sensations.

Simple mindfulness

There are simpler, less physical ways to practice mindfulness. These include:

• Paying attention: Take the time to experience your environment using all your senses — touch, sound, sight, smell, and taste.
• Living in the moment: Try to intentionally bring open, accepting, and discerning attention to everything you do.
• Accepting yourself: Treat yourself the way you would treat a good friend.
• Focus on your breathing: When you have negative thoughts, try to sit down, take a deep breath, and close your eyes. Focus on your breath as it moves in and out of your body. Sitting and breathing for even a minute can help.

Last updated: July 10, 2020

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aHUS 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.