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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.


How to handle the news

Started by jaytone in General Discussions. Last reply by lauren54 yesterday. 13 Replies

After years of my son being treated by a psychiatrist, turns out it is not a psychiatric problem but ALD.  Found out when it was suggested to have him tested since he is losing his memory.  He is 30 years old. Came back positive for ALD.   Each day…Continue

Sean Vitka & Blue Redefined Patient Organization Sponsors Ben's Friends

Started by Scott Orn in General Discussions. Last reply by dancermom Jul 23. 1 Reply

Thrilled to announce that Ben's Friends received a $1,500 donation from Sean Vitka and Blue Redefined (http://www.blueredefined.org/), a non profit patient organization. It's incredible to be recognized by…Continue

Ben's Friend Partnership with PicnicHealth - Electronic Medical Records for Patients With Rare Diseases

Started by Scott Orn in General Discussions Jul 5. 0 Replies

A few weeks ago, my friend Noga Leviner told me she was building an Electronic Medical Records system for people with rare conditions. It's called PicniceHealth (…Continue

If You Could Choose 2 New Things For Your Support Group What Would They Be?

Started by Scott Orn in General Discussions Jun 27. 0 Replies

This post was written by Lovett, a Moderator on Fibromyalgia Support. Lovett is one of the 200+ Volunteer Moderators on Ben's Friends Support Communities. Rather than just posting this on the Fibromyalgia site, I thought every community would…Continue

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Latest Activity

lauren54 replied to jaytone's discussion How to handle the news
"social security should recognize ALD as a disability so that your son can get bennifits, as well as…"
IDM and Tracey Stuart are now friends

Tracey Stuart left a comment for chronmom
"I know it may not feel like it but that's good news. When my son Zack was diagnosed when he…"
Aug 15
chronmom left a comment for Tracey Stuart
"Yes Tracy the said my son scores a two on the Loes scoring chart which means the ALD is in early…"
Aug 15

Top Content 

1 How to handle the news

How to handle the news

Posted by jaytone on March 12, 2014


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Ben's Friends Monthly Newsletter - July 2014 Issue

Posted by Ben on July 31, 2014 at 10:59am 0 Comments

Just the Stats:



Welcome New Members and Greetings from Ben's Friends!


"You're a firework," as the song goes. We…



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