Young ALD Carriers: Our Stories
Adrenoleukodystrophy, or
ALD, is a rare x-linked genetic disease which often results in serious disability or death in males, primarily in boys between the ages of 4 and 10. There is no effective treatment for ALD, and stem cell transplant offers males the best chance for long-term survival. Females are carriers of ALD and have a
50/50 chance of passing the disease on to their children. In addition, most females develop some physical symptoms of the disease after age 35, such as stiffness and numbness of their legs, loss of balance and coordination, and bowel and bladder dysfunction.
Women usually learn that they are ALD carriers after a male relative, such as a brother, father or son, is diagnosed with, or dies from ALD. However, with the recent advent of ALD newborn screening which wil
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