DIFFUSE
To spread. In the case of DIPG, means the tumour is not contained, and that it intertwines with healthy cells, spreading throughout the area in which it grows.
INTRINSIC
‘In’ – i.e. the area in which it exists.
PONTINE
Refers to the ‘pons’ – the top of the brainstem, which acts as a nerve pathway for some of the bodies most important and vital functions, such as breathing and swallowing. This area also affects sleeping, bladder control, balance etc…
GLIOMA
A general term for tumours which originate in glial cells – cells found throughout the brain.
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DIPG is a terminal diagnosis. Each year, around 30 to 40 children in the UK are diagnosed with DIPG, and as of today, there are no medical options other than standard radiotherapy – the same treatment which was offered to children 60+ years ago.
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The average age of a child diagnosed with DIPG is 7 years, and it mostly affects children aged 2 to 12 years.
The cause of DIPG is unknown, though recent research attributes it to issues with cell reproduction during development of the brain cells. Unlike other cancers, environment, or inherited genetic variations do not appear to be linked.
The average survival period, post-diagnosis, is less than 10 months. Less than 10% of children survive beyond 1 year, and less than 1% of children survive beyond 5 years.
There are currently around 70 clinical trials open which aim to treat DIPG. Not one of these is available in the UK. This means that accessing treatment for UK families costs hundreds of thousands of pounds – all of which must be funded privately.
DIPG research is underfunded.
The overall survival rate of children diagnosed with cancer is now around 85%. For DIPG, it is 0%, and brain tumours are the biggest killer of children with cancer each year.
DIFFUSE INTRINSIC PONTINE GLIOMA ( 'DIPG' )
