I decided to start my own blog about living with MCAD. There is very little available to people such as myself as the condition is still not universally recognised. All the information available is aimed at parents with babies or toddlers with MCAD....hello??? What about the rest of us??? It maybe rare but do not forget about those of us who have survived to adulthood! This maybe a good place for a concerned parent too.

So I guess some background would be the best place to start....
I was born with MCAD, diagnosed at about 2 years old. I am now 27 about to turn 28. My parents were in the British Army and we were stationed in Germany when I first fell ill. After travelling back and forth to different hospitals I was finally diagnosed at Great Ormond Street by a young German doctor.....We all laugh about it now!

Before reaching a diagnoses, my case was written off and a Priest bought in. Well, my mother maybe a passive person but you never provoke a lioness when her cubs are involved!!!! She fought for my life...Mum, I never say Thank you enough.

After a diagnoses was confirmed my parents were told that my life expectancy limited and that i would not survive infancy. Anyone who knows me will say I am stubborn and aim high. I am now 27 and planning my wedding. That's fingers up to all you who had predetermined my fate.

Growing up with MCAD can make you feel very alone. Regardless of having my own Consultant and Dietitian, being registered with Medic Alert, every time I have been at crisis these people have been 'unavailable'. I was once asked to trial a drug which side effects included 'a fish like odour' delightful!

Having to deal with things on my own and with the continued support of my mum and fiancee I continue to live as healthy a life as i could have hoped for.

I will join the age of technology and blog about how I deal with my condition day to day, when ill, etc. Hopefully this may helpa few others out there. I would also gladly give help to anyone needing it.