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If your family has been affected by Adrenoleukodystrophy (ALD), consider Adrenoleukodystrophy (ALD) Support Network your second home.
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Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.
Adrenoleukodystrophy (ALD) is a disorder of peroxisomal fatty acid beta oxidation which results in the accumulation of very-long chain fatty acids in tissues throughout the body. Clinically, ALD is a heterogenous disorder, presenting with several distinct phenotypes, and no clear pattern of genotype-phenotype correlation. As an X-linked disorder, ALD presents most commonly in males, however approximately 50% of heterozygote females show some symptoms later in life. Approximately one-third of ALD patients will present with the childhood cerebral form of the disease, which is the most severe form.
My 30 year old son diagnosed 2 years ago with ALD. Last year has seen a rapid decline in his health. Right now he has dementia. Doesn't eat, doesn't know to use the bathroom and cant remember from one second to the next. Puts on different shoes,…Continue
Hi All, My name is Penny, we have an adult son that was diagnosed withALD after a traumatic brain injury. Actually the brain injury became a blessing, through the many doctors and rehabs he went to, it was recommended that we look into ALD. He had…Continue
Governor Jerry Brown Signs Bill to Screen Newborns for ALD(September press release from the Myelin Project: http://www.pr.com/press-release/584040)Governor Jerry Brown signed Assembly Bill 1559…Continue
It's been awhile since we have heard from some of you. Now is a good time to check in, say hello to our newer members, and tell us how you are and what is on your minds. I hope to hear from you soon.Continue
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