Planning for the Future When Your Child Has Adrenoleukodystrophy

Planning for the Future When Your Child Has Adrenoleukodystrophy

You were likely prepared to hear your child was ill, but a diagnosis of a rare and progressive disorder like adrenoleukodystrophy (ALD) could still come as a shock. Among next steps you might want to take is careful planning, so you’re as ready to meet the future as possible.

What ALD?

ALD is a rare genetic disorder characterized by continual degeneration of nerve cells, which carry information to and from the brain. ALD can also affect the adrenal glands, causing them to produce lower than normals levels of certain steroid hormones.

When the disease affects the brain, as it most often does in its childhood form, doctors refer to it as cerebral ALD (CALD). Children can also develop Addison’s disease, another type of ALD. Patients with a form called adrenomyeloneuropathy usually don’t show symptoms until early adulthood, ages 20 to 30.

How will the disease affect our child in the future?

CALD, the most severe type of ALD, is a progressive disorder that usually manifests when the child — usually a male — is between ages 4 and 10. Symptoms can include hyperactivity and learning difficulties, and behavioral changes such as aggressiveness. Your child may also, at some point, begin having vision problems, difficulty swallowing, poor coordination, and inadequate adrenal gland function. After symptoms first appear, the disease often quickly progresses to disability.

Stem cell therapy is the current standard of care for those in early disease stages, which can be soon after a diagnosis. Although a cell transplant cannot repair damage already done, it can, in some cases, prevent future damage. This is why it’s important to consider this therapy early. However, not all patients will be eligible for a stem cell transplant.

Although the average age of diagnosis for Addison’s disease is between 30 and 50, the disease can occur anytime and affect children. Addison’s symptoms usually develop slowly, often over several months. Frequently, the disease progresses so slowly that symptoms are ignored until a stress, such as illness or injury, causes them to worsen.

Signs and symptoms can include extreme fatigue, appetite and weight loss, darkening of the skin, low blood pressure, a craving for salt, low blood sugar, nausea or diarrhea, abdominal pain, muscle or joint pains, irritability, depression, and the loss of body hair.

Addison’s can usually be managed with lifelong corticosteroid replacement therapy.

How can we best care for our child?

Some young patients may require adaptive devices, such as braces, wheelchairs, or automatic chairs. There are also adaptive devices to make daily tasks, such as eating and dressing, easier for patients.

Your child should also wear a medical alert bracelet or necklace in case of an emergency. ALD is a rare disease that few healthcare professionals will be familiar with.

Whether your child has CALD or Addison’s disease, you will likely need help with caregiving or managing a healthcare team.  You may also want to turn to ALD support groups for resources or information, or simply for an empathetic ear.

What about their education?

You will need to file a treatment plan with your child’s school. Such a plan contains information about your child’s disease, treatments, any side effects the school should be aware of, and a list of medications with information about their doses and when your child should take them.

You should also speak with your child’s physician about possible restrictions to diet, exercise, or class times. For instance, some children with ALD may have balance problems or experience fatigue, and may need to be exempt from physical education or classes.

Make certain that special accommodations, such as an accessible elevator, are in place. Depending on the situation, your child may need an individualized education plan for special education instruction, as well as support and other services.


Last updated: Oct. 28, 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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