MY AMN PAGES

My motivation

Female x-ald carriers do often get neurological symptoms. The x-ald gene may lead to a metabolic defect in the metabolism of very long chain fatty acids (VLCFA). 

There are ways to get the blood values of VLCFA normalized. Getting the blood values normalized, or lowered, may be preventive.  

Keeping the VLCFA within the normal range may prevent these fatty acids from building up in the body.  That may be positive.   

Being a clinical nutritionist myself knowing the fact that correcting metabolic defects by dietary adjustments if possible,  is unharmful and positive. Also it is an obvious thing to do. And as with any other metabolic defect that may be corrected with diet, it`s something that is done everyday as a part of the daily routines.    

Research

There are many studies being done in this field aiming at lowering the blood values of VLCFA. 

Research aiming at lowering/normalizing the VLCFA blood values seems to have the same aim as dietary treatment. 

A blood test of VLCFA give information on the recent metabolic turnover. It does not give information on how much VLCFA is deposited in the body or the bloodvalues a while ago. Therefore it can not be drawn any conclusion from few bloodvalues and what risk this gives.  Conclusions based on some VLCFA bloodtests and risk of developing symptoms is widely and incorrectly drawn.