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What is Adrenoleukodystrophy?

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.

Forum

Your Ben's Friends community is on the move!

Started by ModSupport in General Discussions on Monday. 0 Replies

Ben’s Friends is getting a great new look!Very soon you'll log onto ALD Support and find that your community looks and works differently than it did before.Your old friends and…Continue

treatment for late diagnosed

Started by Bình in General Discussions. Last reply by NicholasmomFuller Mar 17. 7 Replies

My son was diagnosed in 4/2014.But i didn't do anything to him for treatment ,because  i'm from Vietnam and in  my country this disease seems to be strange and very rare , my doctor didn't mention to me about any treatment. now myson is almost in…Continue

new diagnosis

Started by tigermike in General Discussions. Last reply by Lindsay hunter Mar 10. 12 Replies

My son was diagnosed 3 days ago 12/16/15. We are still deciding what to do, where to go etc? How do we find out how advanced this disease is. My son does not show many of the symptoms i've read about. He did have a major seizure the week of…Continue

Early diagnosis of X-ALD/ successful treatment?

Started by LittlemanBJ in General Discussions. Last reply by Rachel Jan 24. 2 Replies

Hi our two year old son has recently been diagnosed with X-ALD as a result of genetic testing and the knowledge that I am a carrier. He is currently asymptomatic and will just be monitored going forward from this point. We are hoping that with this…Continue

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Latest Activity


Moderator
FCMMARK left a comment for JLWill
"Welcome JLWill to this supportive community for patients, relatives and friends of those living…"
15 hours ago
JLWill is now a member of Adrenoleukodystrophy (ALD) Online Support Group
15 hours ago

Moderator
ModSupport posted a discussion

Your Ben's Friends community is on the move!

Ben’s Friends is getting a great new look!Very soon you'll log onto …See More
Monday

Moderator
ModSupport left a comment for Michelle
"Hello, Michelle Receiving a diagnosis of any kind of serious condition is very hard to come to…"
Apr 29

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