The story of Melissa
I’m Melissa. I was finally diagnosed just 6 months ago at the age of 26 with type 5 Glycogen storage disease (also known as Mcardles disease.)
Getting a diagnosis of such a rare condition, affecting approximately 300 people in the UK proved difficult.
Mcardles disease is a rare metabolic disorder which causes muscle pain in everyday activities and exercise. There is a risk of muscle breakdown and kidney failure if the condition is not managed correctly.
I’ve had symptoms from the age of 4 and attended several Dr’s appointments throughout childhood and early adulthood, to either be told it’s growing pains or a vitamin deficiency.
To finally have an answer is somewhat relieving after fearing the unknown for so many years and not to have a reason for the pain.
However, there is no cure and very little medical practitioners have heard of the disease. I have learnt techniques to manage the disease over time and feel the best way is to know my limit and remain positive! 🙂
I would like to raise awareness of the condition in order to decrease the age of diagnosis and to make medical practitioners aware of the condition so they know the symptoms to look out for.