What is DIPG?

Diffuse Intrinsic Pontine Glioma (DIPG) is a brain stem cancer that affects young people. It is the most common primary brain tumour in children.

DIPG tumours grow in an area of the brain stem that controls many vital functions such as breathing, blood pressure, and heart rate.

It is a high grade brain tumour. As a result, the tumour tends to grow quickly and is likely to spread to other parts of the brain or spinal cord.

Symptoms of DIPG

DIPG tumours tend to grow very quickly. Therefore the symptoms of DIPG often appear suddenly.

Common symptoms include:

  • Abnormal alignment of the eyes and/or double vision (diplopia)
  • Weakness of facial muscles or facial asymmetry (one side of the face appearing different from the other)
  • Weakness in the limbs (arm and/or leg)
  • Unstable balance and co-ordination
  • Difficulties walking and speaking

The Weill Cornell Brain and Spinal Centre provides a longer list of potential symptoms.

DIPG statistics

DIPG is rare and understudied. Thus, it is hard to provide hard statistical information on the number of children effected.

Scientists believe that 1,000 or more DIPG cases are diagnosed across the developed world each year.

DIPG primarily affects children between the ages of five and nine years old. However, children and young people of all ages have been diagnosed with DIPG.

Treatments for DIPG

There is currently no effective prevention or cure for DIPG.  Due to their location in the brain stem, DIPG tumours cannot be surgically removed.  Treatment options include:

  • Radiation therapy – Although the DIPG Registry reports that up to 85% of children with DIPG show improvement in symptoms after radiation therapy, the cancer almost always grows back after a few months.
  • Experimental chemotherapy – Various forms of experimental chemotherapy are being investigated as potential treatments for the condition. Multiple clinical trials have demonstrated that routine chemotherapy does not increase survival rates in Diffuse Intrinsic Pontine Glioma.

    Professor Steven Gill CED
    Professor Steven Gill
  • Convection Enhanced Delivery (CED) – Delivering chemotherapy and other drugs beyond the blood brain barrier.  Funding Neuro are helping to promote the work of neuroscientist Professor Steven Gill in Bristol, England.

Through his pioneering Convection Enhanced Delivery (CED) system which has been tested to safely deliver drugs past the brain blood barrier, children are now able to receive compassionate treatment and the first real medical breakthough in modern times looks set to transform the lives of DIPG patients around the world.

As a result of CED trials in 2016, the average survival times of those children who used the system has doubled. There is also clear evidence their tumours are reducing.

Funding Neuro will run a clinical trial to prove these results in 2018 in London.

Further support

Please contact us at Funding Neuro with any further questions or concerns. We do not offer support or bereavement counselling, however our staff can offer guidance on best options or put you in touch with other organisations who can help.

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