Diffuse (Intrinsic) Pontine Glioma - DIPG

Pontine gliomas are malignant (cancerous) tumours that originate from the part of the brain known as the brain stem (pons). They develop from cells called astrocytes. Astrocytomas are the most common type of glioma. In children, 80% of brain stem tumours are pontine gliomas.

If a biopsy is carried out they are usually found to be high grade gliomas and are classified according to the grade of aggressiveness (how quickly they grow) as either anaplastic astrocytomas (grade III) or glioblastoma multiforme (GBM).These tumours grow amongst the normal nerve cells of the brain stem making them impossible to remove surgically as the brain stem is a vital area of the brain that controls many body functions.

Please watch this very moving short film made by Katrina Lathrop which brilliantly describes what DIPG is all about:

Less than 40 children a year develop pontine glioma in the UK. This is around 10-15% of all childhood brain tumours. They rarely occur in adults. Like most brain tumours, the cause of pontine gliomas is unknown.

The symptoms are related to the internal pressure that the tumour applies on the brain stem. Occasionally they can cause increased pressure in the head (raised intracranial pressure). Rarely they spread into the spine.

Symptoms include:

  • Squints
  • Swallowing problems
  • Slurred speech
  • Facial weakness
  • Abnormal gait (the way the child walks)
  • Difficulty with tasks like handwriting
  • Gradual decline in school work
  • Changes in personality and behaviour.

If there is increased pressure in the head:

  • Headaches
  • Nausea and vomiting.

If the tumour spreads to the spine:

  • Back pain
  • Difficulty walking
  • Problems with bowel and bladder control.

DIPG is considered one of the worst tumours a child can get because it’s prognosis is so poor. Katy had the same treatment for her tumour as she would have had 50 years ago because there has been very little research done on it. However, this is now changing and we (Katy Holmes Trust) hope to be part of the cure.

(personal statement)