Tips for Fabry Disease Caregivers

Tips for Fabry Disease Caregivers

A person with a rare genetic disease, such as Fabry disease, often needs extra help from a caregiver to cope with the challenges of the disease. If you are a caregiver, you are often under stress to meet the needs of the patient or family member that needs your assistance. Here are a few tips to help deal with the stress of caregiving:

Don’t neglect your health

Your well-being has a direct influence on how well you can assist the person you are caring for, and how well they deal with the challenges of their disease. Therefore, eat well, exercise, and get sufficient rest to be healthy so you can perform at your best. If you are under medication, make sure not to miss any doses.

Ask for help

The feeling of loneliness is common among caregivers, and can be more stressful than the caregiving itself. If not dealt with in time, loneliness may lead to more severe complications such as depression. Several help and support groups can offer timely assistance and networking opportunities, including organizations such as the Fabry Support and Information Group, National Fabry Disease Foundation, and the Fabry International Network.

Unwind at the end of day

It is not uncommon to get frustrated after a tiring day of caring for someone with Fabry disease. This frustration can often lead to venting out in anger at the person you are caring for and even at the doctor. Abusing alcohol and drugs is also a risk.

Therefore, take a break whenever possible and try to keep calm at all times. Go watch a movie, take a walk, or spend time with friends. Do anything that would refresh and rejuvenate you.

Set short-term achievable goals

Fabry disease requires long-term care and symptom management. Therefore, set short, achievable goals to keep you motivated, as well as the person you are caring for. Discuss with the doctor what kind of goals to consider, given the severity of symptoms and disease progression of the care recipient.

Keep updated on latest research

Research about new therapies for rare diseases is ongoing, so keep yourself abreast of developments. Discuss them with the doctor and look for opportunities for your care recipient to enroll in new clinical trials.

You can subscribe to our website to get relevant information and regular updates about Fabry disease.

Keep the doctor informed

Keep doctors updated on your caregiving approach on a regular basis to help identify positive outcomes and correct any shortcomings.

 

Last updated: Sept. 22, 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.

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