Receiving a diagnosis for a rare genetic metabolic deficiency can be very frightening for a family, especially if they know nothing about the disorder. Gaining information about an FOD is a positive step toward easing some of that fear ~ you have to know what you're dealing with medically before you can put all other ramifications in perspective. It IS possible to live a long and healthy life with an FOD ~ the KEY is diagnosing/treating it as early as possible ~ and with FODs now being screened for at BIRTH in many states/countries, more and more babies' lives are being saved!
Although each FOD child/adult, even within the same family, can respond and present differently with a particular disorder, there are some similarities among all the FODs. Also keep in mind there is no ONE blanket presentation for FODs ~ and even if the initial acylcarnitine profile comes back looking normal or inconclusive one can still have an FOD. The best time to take the blood/urine tests is when one is ill/in crisis. If blood is taken when well it can sometimes come back as normal.
We hope that by reading this section it will help you begin to understand how an FOD affects the body metabolically, the current treatment procedures, the ongoing research studies available to FOD families, as well as some of the other life issues that impact an affected family. [Please note that FODs are NOT the same type of disorders as Adrenoleukodystrophies (ie., ALD - even though they also involve fatty acids as do the FODs), which is often associated with 'Lorenzo's Oil.' ]