What is Adrenoleukodystrophy (ALD)?
Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, which means, it most severely affects boys and men. ALD involves multiple organs in the body, but most prominently affects the brain and spinal cord. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons. Without the myelin sheath the nerve cells that allow us to think and to control our muscles no longer function correctly. ALD knows no racial, ethnic or geographic barriers.
Childhood Cerebral ALD is the most devastating form of ALD, it generally occurs between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they may simply show minor behavioral problems, such as withdrawal or difficulty concentrating, vision problems, or start to have coordination issues. Gradually, as the disease spreads throughout the brain, their symptoms grow worse, including blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or die usually within 2-5 years of diagnosis.
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