Understanding Cerebral Adrenoleukodystrophy (CALD)
Cerebral ALD is a progressive form of adrenoleukodystrophy (ALD) that occurs in about 40% of boys with ALD. In cerebral ALD, the layer of myelin that protects nerves in the brain is broken down. If left undiagnosed or unmanaged, this can have severe effects.
These effects can potentially include significant disabilities, such as an inability to speak or respond, blindness, or even death. However, the progression of cerebral ALD may be effectively stopped if it is detected early. Working with your team to monitor for cerebral ALD is a crucial component of your plan.
Monitoring for Cerebral Adrenoleukodystrophy
ALD progresses differently in every child. And although about 40% of boys will develop cerebral ALD, all boys with ALD should be monitored for progression through regularly scheduled MRI scans.
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We go to Boston, and we love Boston, so it’s kind of like you’re going on a trip, but you can’t enjoy it until after you have the tests.”
Stephan
ALD caregiver
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We go to Boston, and we love Boston, so it’s kind of like you’re going on a trip, but you can’t enjoy it until after you have the tests.”
Stephan
ALD caregiver
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MRI scans and hospital visits can be a stressful experience. It is not uncommon to see changes in your child’s behavior before, during, or after an exam or procedure. Children can react differently depending on a number of factors, including their age, the exam, or past medical experiences. Working with your child to teach healthy techniques such as deep breathing, and redirection can help. When it comes time for an MRI scan, they can be more confident if they feel as if they are participating and have a part in their care.
These MRI visits can start as early as the first year of life (or later, depending on when they are diagnosed) and continue through adolescence. Your MRI schedule might look like this:
You can work with your neurologist or ALD specialist to come up with a plan that works for you and your family.
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I get my son ready for his MRI by telling him it’s time to become an astronaut, fly to the moon, and come back home. He gets really excited.”
Suzanne
ALD caregiver Friendly tip: Characterizing an MRI appointment as an adventure or a special activity can help make it a more positive experience for your child. |
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I get my son ready for his MRI by telling him it’s time to become an astronaut, fly to the moon, and come back home. He gets really excited.”
Suzanne
ALD caregiver Friendly tip: Characterizing an MRI appointment as an adventure or a special activity can help make it a more positive experience for your child. |
Working with Your Care Team
There are specialists in reading MRIs for patients with ALD, such as neurologists or neuroradiologists who will compare a new MRI to a previous MRI. These specialists may be a part of your team, or your team may send your scans to these specialists.
Waiting for the results of your child’s MRI can be stressful. Setting expectations about when you will receive results can help you plan accordingly.