Bill wrote:
<<Hi, does anyone on the list have any info on Adrenoleukodystrophy (ALD)
and
a paleo diet?
Some friends of ours have a six-year-old boy who was just diagnosed with
ALD. The experimental treatments suggest a low-fat diet. >>

Hi Bill,

 The nutritional goal with his disorder is to decrease the exogenous VLCFA
(very long chain fatty acids).  This includes nuts, the skins of vegetables,
fruits, etc.  In other words, the diet, by necessity, is highly restrictive
in fat intake.

There was a book and a movie a while ago based on the true story of a young
man with ALD.  His family worked to find a cure with a great deal of
resistance from the child's doctors.  The story is called "Lorenzo's Oil".
It is about an oil given to him that helped arrest the disease.  It
contains:

Glyceryl Trierucate (GTO) which naturally occurs in corn oil, olive oil and
sunflower seed oil

Glyceryl Trioleate Oil (GTE) which naturally occurs in rapeseed oil

Lorenzo's Oil is four parts GTO to one part GTE

With the restricted diet it normalizes RBC membrane microviscosity and may
normalize C:26:0 levels within a month.

Lorenzo was diagnosed in 1984 and is now 22 years old. Lorenzo's father was
awarded an honorary Ph.D. for the work he did in researching this treatment.

Others have had mixed results with "Lorenzo's Oil".  Don't discount the
power of the family refusing to believe that this disease was hopeless and
they were helpless.  This, more than anything perhaps, is why Lorenzo is
alive today.

Here is some other research on ALD:

Singh I, Khan M, Key L, Pai S. Lovastatin for X-Linked Adrenoleukodystrophy.
New England Journal of Medicine. 339(10):702-703.

Kemp S, Wei HM, Lu JF, Braiterman LT, McGuinness MC, Moser AB, Watkins PA,
Smith KD (1998) Gene redundancy and pharmacological gene therapy:
implications for X- linked adrenoleukodystrophy Nat Med 4:1261-8 [Medline]

Singh I, Pahan K, Khan M (1998) Lovastatin and sodium phenylacetate
normalize the levels of very long chain fatty acids in skin fibroblasts of
X- adrenoleukodystrophy. FEBS Lett 426:342-6 [Medline]

Bone marrow transplants are also a treatment possibility (success is
limited), although the outcome largely depends upon the stage of the disease
and the condition of the child when undergoing the transplant.  Lorenzo's
Oil is recommended prior to the transplant to stabilize the child.

Siobhan