ALD and AMN newsgroup

Christopher Ogden christopher at ogdenc.demon.co.uk
Sun Nov 20 06:03:25 EST 1994


I am an adult sufferer of adrenomyeloneuropathy (AMN), an adult, and
usually less severe form of the disease adrenoleukodystrophy (ALD) that
usually attacks boys in their early years and is normally fatal. ALD was
the subject of the film "Lorenzo's Oil".It causes progressive
deterioriation in myelin brought about by the presence of unusually high
levels of very long chain fatty acids (VLCFAs) that the body cannot
metabolise (due to a genetic error).

I am male, aged 51 and am relatively lightly affected; I take Lorenzo's Oil.

In the UK I have found it hard to locate other people with the disease to
form a self help group. I have started a newsletter called "amnn-easier"
to act as an exchange for pople to share ideas about therapies, diets etc.
I would be interested in moderating a news group on the net for people
with the disorder, but I am not sure how to do that. Can anyone tell me
quickly how to do it?

I am also particularly interested in encouraging people to take charge of
the disease and to form a more positive and open working relaitonship with
their medical advisers. I would therefore also welcome correspondence from
physicians who would be interested in using the newsgroup to advance the
understanding of the disease.

Anyone who is interested please contact me. My net address is 

christopher at ogdenc.demon.co.uk

Best regards

Chris Ogden



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