Ways Extended Family Can Help in Care for Child With CALD

Ways Extended Family Can Help in Care for Child With CALD
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If there’s a child in your extended family with childhood cerebral adrenoleukodystrophy (CALD), you know how stressed and overburdened the immediate family is. Here are some ways you can help them and show your support.

Understand CALD symptoms

The symptoms of CALD generally begin when patients, mostly boys, are between the ages of 4 and 10, and progress rapidly to disability. Patients generally have learning and behavioral problems. Aggressive behavior, vision problems, difficulty swallowing, poor coordination, and impaired adrenal gland function may also occur.

Help with chores and errands

Parents often struggle to meet their children’s medical, behavioral, and social needs, which can lead to social isolation and exclusion. You can help them with chores and errands to make sure they have more time for other things.

Give the family free time

If you live nearby, you could look after the patient for a few hours. This would provide a much-needed break for the parents, who could then spend some time alone with each other or other children they may have.

Make sure you have proper instructions and the necessary tools to look after the patient, such as knowing how to give certain medications, for example. You should also familiarize yourself with any devices used by the patient.

You could also spend time with the patient’s siblings, who may be feeling left out.

Provide emotional support

You can offer emotional support to help the parents with any feelings of pain, sadness, denial, grief, or fear. While you may feel these emotions yourself, be mindful that many parents take on the added burden of supporting family and friends rather than process their own emotions.

Attend support group meetings

Support groups can help patients and their families. By becoming involved, you can learn more about the disease and what the patient and their parents are going through. In so doing, you may find more ways to help.

 

Last updated: Jan. 20, 2021

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Adrenoleukodystrophy 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 providers 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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