Mindfulness for People With Porphyria

Mindfulness for People With Porphyria
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The symptoms of chronic diseases such as porphyria can present real challenges in your everyday life. One way to help cope is through a practice called mindfulness.

The following will provide more information on how to practice this technique.

What is porphyria?

Porphyria refers to a group of disorders in which porphyrins — molecules the body normally uses to make hemoglobin — accumulate in the body. Hemoglobin is the protein that binds oxygen in red blood cells.

The disease can be either acute or cutaneous, or more long-lasting but less intense. An acute porphyria attack can cause dehydration, breathing problems, seizures, and high blood pressure. Cutaneous porphyria symptoms can include pain-causing sun sensitivity, sudden painful skin redness and swelling, blisters on exposed skin, and fragile, thin skin, and itching. Red or brown urine, and excessive hair growth in affected areas also are symptoms of cutaneous prophyria.

What is mindfulness?

Mindfulness is the practice of being constantly aware of your thoughts, feelings, bodily sensations, and the surrounding environment. It means tuning in to what you are sensing at the moment instead of thinking about the past or the future.

According to the stress-reduction program proscribed by the Institute for Mindfulness-Based Approaches, while you can’t always change your circumstances, you can choose your response to them.

How can mindfulness help?

There are no specific studies about mindfulness and porphyria in the literature. However, an investigation involving people with other chronic disorders showed that mindfulness can be beneficial to patients’ mental health.

A systematic review of studies that focused on patients with a variety of chronic illnesses also indicated that mindfulness-based stress reduction (MBSR) improves their overall state, and helps them to deal with a broad range of clinical problems.

Examples of structured mindfulness

Examples of structured mindfulness include three key types of meditation: body scan, breathing, and walking.

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, in order, moving from toe to head, or head to toe. Be 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

Taking care to avoid sun exposure if you have cutaneous porphyria, find a quiet place 10-to-20 feet (3-to-6 meters) in length, and begin to walk slowly. Focus on the experience of walking, being aware of the sensations of standing, and the subtle movements that keep your balance. When you reach the end of your path, turn and continue walking, maintaining awareness of your sensations.

How can I practice mindfulness?

There also are simpler ways to practice mindfulness. These include:

Paying attention

Try to take the time to experience your environment using all your senses — touch, sound, sight, smell, and taste.

Living in the moment

Attempt to intentionally bring open, accepting, and discerning attention to everything you do.

Accepting yourself

Treat yourself the way you would treat a good friend.

Focusing 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: Dec. 22, 2020

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Porphyria 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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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