Tips for Pompe Disease Caregivers

Tips for Pompe Disease Caregivers

Rare genetic diseases such as Pompe disease are difficult to deal with, not only for the patient, but also for caregivers. Here are some tips to ensure you are able to give the best possible care to a person with Pompe disease.

Be conscious of your own health

Your ability to meet the needs of the patient depends largely on your own well-being. Ensure that you eat and sleep right, and attend to your own medical issues as well. Make sure not to miss your medication if you are undergoing any therapy.

Ask for help when needed

Caregiving is stressful, so don’t shy away from asking for help when you need it. Keep your family and friends in the loop so that they are aware of your requirements. It is also a good idea to network with other Pompe disease caregivers and register yourself with support organizations such as the International Pompe Association, Association for Glycogen Storage Disease, and Metabolic Support UK.

Relax and rejuvenate

Caregivers often find themselves feeling frustration and guilt because of the stress associated with their duties. Therefore, it is important to look for ways to relax and rejuvenate from time to time.

Have a goal-based approach

Short, achievable goals can be motivating for both you and the patient. It also helps keep track of symptom progression and lets you know whether you should be talking to the doctor about switching therapies. If you are unsure about what goals to set, consult your doctor.

Stay updated

It is important to keep yourself updated on recent developments in Pompe disease research and new treatment methodologies. It is a good idea to discuss these developments with your doctor, who may be able to suggest enrolling the patient in a clinical trial testing a new experimental treatment should such an opportunity arise. Subscribing to our website is a great place for starters.

Keep your doctor in the loop

Make sure to update your doctor on a regular basis about your caregiving approach. Doing so can help identify any lapses and allow for corrective steps if needed.

 

Last updated: Sept. 22, 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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