What is DIPG?

Diffuse Intrinsic Pontine Glioma (DIPG) is a brain stem cancer that affects young people. It is the most fatal of these brain cancer types. It is frequently now referred to as Diffuse midline glioma (DMG).

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, i.e. it grows quickly. 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 DIGP

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.

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DIPG statistics

DIPG is rare and understudied. It is therefore hard to provide hard statistical information on the number of children affected.

Scientists believe that 1,000 or more DIPG cases are diagnosed across the developed world each year with around 40 each year in the UK.

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, however 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.
  • Convection Enhanced Delivery (CED) – Delivering chemotherapy and other drugs beyond the blood brain barrier.  Funding Neuro has assisted the work of neuroscientist Professor Steven Gill in Bristol, England over a number of years  including offering CED to a small number of children with DIPG on compassionate grounds with the approval of the MHRA. Thanks to the bravery and commitment of the families and of course the children themselves, who have undergone this experimental treatment the team has learned a considerable amount about how to deliver drugs safely into these tumours with some encouraging results. This information has been presented at international meetings and published in January 2021.
  • Immunology Treatments – Immunology is the study of the immune system and is a very important branch of the medical and biological sciences. The immune system protects us from infection through various lines of defence. If the immune system is not functioning as it should, it can result in disease, such as autoimmunity, allergy and cancer. It is also now becoming clear that immune responses contribute to the development of many common disorders not traditionally viewed as immunologic, including metabolic, cardiovascular, and neurodegenerative conditions such as Alzheimer’s. By applying various techniques Immunologists can effectively help the body defend and heal itself.
  • Ultrasound treatments – this technique applies non-invasive focussed high-frequency sound on various conditions. Early studies in America have proved that it is safe and may be effective against tumours.

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.