Zellweger Syndrome Support Group

Zellweger syndrome is a rare, congenital disorder characterized by the reduction or absence of peroxisomes (cell structures that rid the body of toxic substances) in the cells of the liver, kidneys, and brain. If you or a loved one is suffering from this syndrome find the support you need here.

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Possible treatments

Has any parent had success with changing the amount of very long chain fatty acids in their child\'s diet?

Replies

deleted_user
deleted_user

As a positive person, since 2000, I have learned that knowledge is power! At first I was in denial, did all the wrong things, because I honestly thought I was going to die! But thank God for stepping in to remind me that regardless of our situations, HE will take care of us! I now try to get around my community to educate people about hiv/aids. To me my illness has been a blessing in disguise!
deleted_user
deleted_user

Have you checked out this Peroxisomal site http://health.groups.yahoo.com/group/Peroxisomal_Disorders/messages ? 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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