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X-linked adrenoleukodystrophy (X-ALD) - Parents

Confused with son's diagnosis; are there male carriers?

By Js_Mommy · New reply May 20, 2009
14 replies
My almost four-year-old had an MRI at 3 yrs 9 mos which showed "mild delay in myelination." The degree is that it should have been fully myelinated by age two. We then had him tested for the leukodystrophies ...

New here, 12 year old son diagnosed with ALD

By Tonivr · New reply March 4, 2009
14 replies
My son Ryan was diagnosed with ALD after a adrenal crisis following spine surgery in Nov 08. Ryan also has Loeys-Dietz Syndrome, a connective tissue disorder. We did not know about his adrenal issues ...

Does anyone live in Pittsburgh??

By blissboys · New reply February 11, 2009
1 reply
Does anyone have a child with X-ALD live in the Pittsburgh area?? I can't seem to find anyone ...

4-phenylbutyrate

By sjm · New reply February 8, 2009
1 reply
Hi Does anyone know what 4-phenylbutyrate is? When looking at information about Lovastatin in regards to ALD/AMN, I have come across 4-phenylbutyrate in conjunction with Lovastatin ...

Adrenal Gland Failure

By CDNagel · New reply January 20, 2009
11 replies
My 18 year old son was diagnosed with X-ALD when he was an infant. He participated in the first Lorenzo's Oil study group and was on a non-fat diet until he was 11 years old. He was (and still is) asymptomatic ...

Breakdown while Trick-or-Treating

By KateNDalton · New reply November 4, 2008
9 replies
My 4 year old son was just diagnosed in January of this year. It feels like it was ages ago since we were in Maryland at Johns Hopkins and receive the LO and then to Riley Hospital in Indianapolis for ...

Any LO patients showing symptoms?

By KateNDalton · New reply October 14, 2008
1 reply
Just curious to see if any of you have children in the Lorenzo's Oil study that are showing symptoms regardless ...

How to Deal with Life on Life's Terms

By KateNDalton · New reply September 29, 2008
17 replies
I am a mother of a beautiful 4 year old boy who was diagnosed in January of this year with ALD. He didn't show any signs but my dad has AMN, my male cousin has AMN, my female cousin is a carrier and her ...