Has anyone heard of Schilder's Disease?
I've had 3 brothers (approximately 2 years of age) die from this and would like any information at all
(especially genetic information). I am very concerned about future generations.
Thank you...G. A. Price.
Just found out that that Schilders Disease is now called Adrenoleukodystrophy.
They no longer refer to a disease's name by the founding researcher.
This should help in my inquiries..
This is what the NIH says about Schilder's disease:
Schilder's disease is not the same as Addison-Schilder disease (adrenoleukodystrophy). Schilder's disease is a rare progressive demyelinating disorder which usually begins in childhood. Symptoms may include dementia, aphasia, seizures, personality changes, poor attention, tremors, balance instability, incontinence, muscle weakness, headache, vomiting, and vision and speech impairment. The disorder is a variant of multiple sclerosis
As for adrenoleulodystrophy, have you heard of Lorenzo's Oil? I worked for Croda for 14 years and that is the company that developed Lorenzo's Oil. If boys have not developed too many symptoms if can be of help. You could contact the Myelin Project or croda.com (in the UK) and ask about it. A former colleague of mine named Keith (forgot his last name) had a lot to do with the research but is retired now. The chemist who developed the oil died shortly after the movie (if you saw it), as has Dr. Hugh Moser who was instrumental in getting Lorenzo's Oil used. If you have any trouble getting information, I can contact someone in the US for you; I still have friends at Croda. I am a medical writer now.
Barbara Woldin barbwoldin@comcast.net
NORD recently had an article about Lorenzo's Oil in their newsletter. You might want to write them and ask for a copy www.rarediseases.org Good Luck and God Bless
Muriel
Amyloidosis Support Groups Inc.
ASG www.amyloidosissupport.com
On the genetics of Addison-Schilder disease (adrenoleukodystrophy): it is an x-linked rare genetic disorder, which means one of the mother's x chromosomes carries the faulty gene, the other does not, and the mother has normal myelin formation. Each daughter receives one x chromosome from each parent, so has at least one normal gene and has normal myelin. Each daughter has a 50% chance of carrying the faulty gene on one x chromosome. Each son receives only one x chromosome and only from his mother, so each son has a 50% chance of having the gene and the disease, being unable to produce adequate amounts of normal myelin without a special diet. This sounds like the disease you siblings had, with their early deaths. A son without the disease does not carry the gene and cannot transmit it to further generations.
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