Tips for Managing Stress When You Have Pompe Disease

Tips for Managing Stress When You Have Pompe Disease

Living with the symptoms of a rare disease like Pompe disease can be very stressful. Following are a few tips to minimize stress if you have been diagnosed with Pompe disease.

Know Pompe disease and its symptoms

Having a good understanding of the nature of Pompe disease symptoms and their management is key to avoiding stress. Most Pompe disease symptoms, especially those of the late-onset type, can be managed with proper caregiving, diet, and appropriate treatment.

Be active at all times

Stay busy by engaging in activities that interest you to. It could be a game of chess or a crossword, or even paying a visit to family or friends.

Light and moderate exercise helps to lower stress levels. Check with your physiotherapist for personalized exercise recommendations. However, do not overdo any activity that might worsen your symptoms and increase stress.

Ensure adequate nourishment

Diet plays a very important role in the management of Pompe disease symptoms. Proper dietary considerations can help to significantly alleviate symptoms and, as a result, reduce stress. Consult your doctor or dietitian about which foods are recommended for you and how often you should be eating them.

Adequate fluid intake is essential for hydration and to minimize the risk of joint injuries. Avoid smoking, alcohol, and caffeine.

Have a positive outlook

Your thoughts directly affect stress levels so it is important to be in a positive frame of mind as much as possible. Avoid reading or thinking about negative things. Engaging the mind in things that interest you is a good way to boost positivity and overall confidence levels.

You also can practice techniques such as meditation and mindfulness to reduce stress.

Network with peers and join support groups

Having Pompe disease does not mean you should be disconnected from social life. Family and friends form your greatest support system and staying in touch with them can help you remain positive and lower stress.

Knowing that you have reliable company in times of need can help relieve stress, so make sure to join support groups and interact to establish healthy relationships. Organizations such as the International Pompe Association, Association for Glycogen Storage Disease, and Metabolic Support UK offer opportunities for networking.

 

Last updated: Oct. 18, 2019

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Pompe 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.

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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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