What is Zellweger Syndrome
Zellweger syndrome is a rare, congenital disorder (present at birth), characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substance...
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Has any parent had success with changing the amount of very long chain fatty acids in their child's diet?
Posted on 08/04/06, 08:08 am |
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Have you checked out this Peroxisomal site http://health.groups.yahoo.com/gro... ? Or www.zbsn.org... you can access message boards and invite people here. The parents I am sure, would be willing to talk to a Doctor regarding what they have tried. I am the President of the Zellweger Baby Support Network. Many of our babies do not live long enough to be on a special diet but we are connected to the Peroxisomal site and there are many families there that could tell you what they do. 
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