Daily Life

The quality of life for adrenoleukodystrophy victims is poor. One patient said he felt like he “was dying piece by piece, a little more each day”. This same man lost his vision, which meant he could no longer enjoy his favorite hobby - reading. He now lives with a professional care provider that prepares his food, takes him on walks in his wheelchair, takes him to do errands, and assists him with stretching and speech exercises on a regular basis.

One woman watched her child with ALD decline at an alarming rate to the point that he was wheelchair-bound and being fed through a tube in his stomach. The little boy had severe muscle spasms and persistent vomiting to the point he could hardly keep his food down. His mother said that he eventually reached a point that he was “in a vegetative state”, because he was blind, deaf, unable to speak, and unable to move any part of his body.

Many ALD patients need full-time care providers.