Tips for Managing Stress When You Have Fabry Disease

Tips for Managing Stress When You Have Fabry Disease

Fabry disease is a rare genetic disorder that impairs the body’s ability to break down a type of fat called globotriaosylceramide (Gb3 or GL-3), due to the deficiency of an enzyme called alpha-galactosidase A. Accumulation of Gb3 inside cells causes a wide range of symptoms, some of which can be triggered by stress.

Here are some tips to cope with stress if you are living with Fabry disease.

Learn about the nature of your symptoms

If you have been diagnosed with Fabry disease, it’s important to get acquainted with the nature of its symptoms to avoid stress or panic. Many symptoms can be managed with proper care and timely treatment.

Consult your healthcare provider to learn more about Fabry symptoms, results of any diagnostic tests you’ve taken, and available treatment options.

You can also find a lot of information on our website, where we regularly publish news stories about ongoing research in Fabry disease, as well as resource pages about the disease and its treatment.

Engage in physical activity

Keeping yourself physically active, like taking a walk in a park, or engaging in regular and moderate exercise. Even catching up with friends and family is a great way to lower stress levels.

Don’t overexert

Excessive physical activity can add to stress and increase the likelihood of pain. Take adequate and frequent rests or breaks to avoid overexertion and tiredness.

Try to always be positive

Negative thoughts directly contribute to higher stress levels. It is important to keep your mind calm and to maintain a positive outlook. Engage your mind with activities such as solving a crossword puzzle, playing simple games, or reading an engaging book. Meditation and mindfulness are also great ways to stay calm and reduce stress.

Eat right and drink well

Diet plays an important role in the management of Fabry disease symptoms. Your doctor or dietitian may recommend a low fat, low sugar diet to reduce the risk of heart and kidney disease.

You should also keep yourself well hydrated to prevent joint injuries. Sip water or fruit juices at regular intervals.

Find a support group

Joining a support group can go a long way in relieving stress. A supportive network of friends and family can help you in times of need, and often have helpful advice on ways of coping with the disease.

Organizations such as the Fabry Support and Information Group, National Fabry Disease Foundation, and Fabry International Network provide access to support groups and offer information about disease management.

Stay in touch with friends and family

Friends and family form your greatest support system. Be in touch with them, make them aware of your symptoms, and find time to discuss things you most enjoy in life.

Stay away from alcohol, caffeine, and nicotine

Stressful situations can lead to excessive smoking or drinking. Understand that substances such as alcohol, nicotine, and caffeine often increase the propensity to feel stressed. Reducing their intake can help you feel and be more relaxed.

 

Last updated: Oct. 3, 2019

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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.

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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.