Tips for Caregivers of Patients with Adrenoleukodystrophy

Tips for Caregivers of Patients with Adrenoleukodystrophy

Caring for someone with a rare disease such as adrenoleukodystrophy (ALD) can be very challenging. Here are some tips to help you help yourself while caring for a person with ALD.

Take care of yourself

Caregiving can be stressful and caregivers often lose track of their own health while looking after someone else. However, remember that your health is just as important as that of the person you are helping. Make sure you eat and drink, and sleep well. If you are undergoing any therapy yourself, make sure you do not miss any medications or therapy sessions.

Consider joining a support group

Joining a support group can provide networking opportunities and up-to-date information about the disease and caregiving practices. You also stand to learn from the experiences of other patients and caregivers. Organizations that provide such opportunities include the Stop ALD Foundation, ALD Life, ALD Foundation, and The Myelin Project.

Accept help from others

Sometimes, accepting help from others can lessen the burden of caregiving. If you have a friend who can lend you a helping hand to take care of the patient, or volunteers to run an errand for you, accept the offer.

Take breaks from time to time

It is natural to develop feelings of frustration and guilt after a strenuous day or night of continuous caregiving. It is important to address this because you may run the risk of venting your frustration at the person you are caring for or on doctors and therapists.

Allow some time for your own relaxation and rejuvenation. Go for a walk, take pets for a stroll, spend time with family and friends, or do anything that you feel may help you calm down and rejuvenate.

Break your tasks into easily achievable parts

Caring for a patient with ALD is a long-term task so, it helps to break it into short, achievable parts to keep both you and the patient motivated. Start with simple goals such as improving mobility for common tasks using aids and adaptations, reducing pain, or implementing a proper diet. Consult your doctor if you are not sure about setting a particular goal.

Keep yourself updated

ALD research is a developing field so it helps to keep yourself abreast of new treatment options or upcoming clinical trials for which your patient may be eligible. Subscribing to Adrenoleukodystrophy News can be a great way of staying current about about the disease.

Keep your doctor informed

It is important to keep your doctor informed on a regular basis so that any concerns, corrections, or refinements about your caregiving approach can be implemented without delay.


Last updated: Jan. 24, 2020


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 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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