Sunday 23 June 2013

So what is MCAD?

So It would make sense to explain what MCAD is for those who may stumble across this blog by accident. I presumme most have typed MCAD into google, as I have done so many times hoping something new will pop up!

Medium-chain acyl-CoA dehydrogenase deficiency, more commonly known as MCAD deficiency is a disorder of fatty acid oxidation that impairs the body's ability to break down medium-chain fatty acids into acetyl-CoA. The disorder is characterized by hypoglycemia and sudden death without timely intervention, most often brought on by periods of fasting, vomiting or illness. Prior to further screening of newborns, MCADD was an under diagnosed cause of sudden death in infants. Individuals who have been identified prior to the onset of symptoms have an excellent prognosis.

Basically, an individual with MCAD cannot produce their own energy which is why they need to keep on top of the food thing. Stress on the body or mind can cause the body to use up its energy supply quickly this is when those with MCAD get into trouble. It is different for each individual. Some individuals have a decent level of Carnitine to help the breakdown of fatty acids some of us (aren't I lucky) have practically nothing.


MCAD is an inherited deficiency and typically most prevalent in individuals of Northern European Caucasian descent.

There is no treatment or cure (despite what an ex 'religious' friend of mine told me. Emphasis on EX. God cannot alter my DNA). Avoid fasting and keep up the blood glucose particularly in stressful situations such as exercise and illness....sounds simple. I wish!

Some Doctors recommend treatment with L-Carntine, I found this did not help. The incorrect dosage can make you smell like a fish. I was asked to trial this for my Doctors but had to pay for it. Thank you NHS, I did not know Guinea Pigs paid! Not only did I have to pay for a drug that THEY wanted to test but each time I went to the pharmacy it was a nightmare. The pharmacist would ask what it was, I would explain, of course they had never heard of MCAD. Then they would ask their colleagues, then they would get their books out, then call the Consultant.....and on and on and on. A month later it would arrive. With each repeat prescription the fun would start again.

 From my own research I have found that foods containing mono -triglycerides should be avoided. These fats will sit on the liver. Having cut these foods out myself it has made a huge difference to my well being. Foods containing this fat are; all dairy products (cow, buffalo, goat and anything else you want to milk), palm products, coconut and anything made with or cooked in lard.

 I must stress I am no Doctor however this condition was unheard of when I was diagnosed. I have gained understanding about it at the same rate as the professionals. They may have labs and computers with a higher IQ than myself but nothing beats first hand experience or a human test subject. Me.

The best treatment is look after yourself, keep some glucose tablets on you and wear a medic alert tag if you are out and about. If you are in hospital, even if it is something routine, do not expect any of the medical staff to know what it is and demand they contact YOUR Consultant. Do not take NO for an answer. BELIEVE ME.




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