Adrenoleukodystrophy (ALD) is a serious genetic disease characterized by the loss of myelin, which is the protein coat protecting the nerve fibers that carry information to and from the brain. Without this protection, nerve cells are more fragile and easily damaged while also having difficulty transmitting signals to and from the brain. The disease also affects the adrenal glands, preventing them from producing enough steroid hormones.
What is an adaptive device?
Adaptive devices or aids are tools or devices that can be used by patients to make daily tasks easier. There are different types of adaptive devices, many of which must be tailored to specific patient needs.
Walking and mobility aids
Many patients with ALD (both children and adults) will have difficulty with mobility. Walking and standing may become more difficult as the disease progresses and affects balance and muscle strength and control.
Some patients may require a cane or an orthotic brace. Others may need more support, such as a walker or motorized chair.
Many patients with ALD struggle with simple daily tasks such as getting dressed, brushing their teeth, or preparing food. There are many devices that can make these tasks easier. Some patients may only need to add a soft rubber handle to items such as toothbrushes to make them easier to grip. For others, devices designed for patients with limited mobility may be necessary.
Work or office aids
For many patients, tasks that require dexterity, such as writing or typing, may become more difficult as the disease progresses. Voice-to-text software may make these tasks easier.
Some patients with ALD may experience hearing loss or worsening vision as the disease progresses. Devices such as hearing aids can be used to amplify sounds. Glasses or contact lenses may help correct vision problems.
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