Very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency

One of the medical issues I was made aware of just before I lost insurance was VLCAD. It showed up in some of the blood work that the genetics doc ordered. It is when the body cannot convert fat - in my case very long-chain) into energy especially during times of fasting. Crisis's can occur during such times as illness, fasting and exercise. They can be as mild a being slightly tired to having to be admitted to the hospital. According to estimates 1 in 40,000 to 120,000 people are affected. It is attributed to a genetic mutation in the ACADVL gene. VLCAD

I am having to research web pages and get help from others but I am trying to ferret out what diet will work the best for me. It is hard enough to try to ensure my children have the right foods and often enough let alone make my own menu - at least they do not have any major food allergies that we know of at this time. I am exploring FODS support group to find some recipes and food suggestions. http://www.fodsupport.org/
Currently I try to add in Medium Chain oils - coconut and I am finding that I need to incorporate more carbs into my diet. 

So each day is a new adventure and a new attempt at feeling better. I know that there is no cure but I do know there are options and that as long as I have breath in me I will at least try to stay as healthy as my conditions will allow and just deal with the things in my control and just enjoy the life I have. 


Each day is a new day to spend with my family and friends and that is all I can ask for.