I was diagnosed when I was 30 after running a half marathon in 2010. I was admitted to hospital that night as they thought I just had muscular pain from running the race. The muscle spasms were actually full muscle breakdown and I was admitted to the HDU with a CK level of over 400,000. I have been told what happened as I was unconscious for 10 days. I spent 3 weeks in total on dialysis to restart my kidneys as they had failed and had a few other serious complications. After a 5 week stay in hospital it led to the Doctors discovering I have a ‘mild’ form of VLCAD ( that didn’t seem a mild way to find out!).
I haven't been told to follow a strict diet as such, (so no MCT oils etc for me), however I am much more aware of what I eat and can seem to control things before it gets to the hospitalization stage. Despite having this condition I do lead a pretty normal life — I work full time, have my own house and even manage to go to the gym again in my lunch hour. It took a lot of recovery to get over my stay in hospital as that was a life or death situation for a long time.
I know a lot of people find out they have this condition with screenings or constant trips to the Doctor etc. It seems I decided to be a little different to that, so if you have any questions about my hospital stuff please feel free to ask!
Sadie :) United Kingdom