DIFFUSE
The tumour cells are not a single mass of cells contained to one area but are spread and mixed with other normal healthy cells and tissue in the brain. It's difficult to remove these tumors through surgery without harming the healthy tissue.
INTRINSIC
Meaning “in” or inside the part of the brainstem called the pons.
PONTINE
Refers to the specific location that the tumour is located. The pons is an area of the brain that is part of the brainstem, which is situated at the base of the brain, just above the neck. The brainstem connects the brain to the spinal cord. The pons is an essential part of the brain stem that controls blood pressure, heart rate, breathing, vision, hearing, speech, muscle coordination and balance
GLIOMA
Describes tumours originating from the glial cells in the brain. Glial cells surround, protect and support neurons, or nerve cells, that carry messages in the brain. Glial cells are found throughout the brain and gliomas can form in different areas of the brain. DIPG occurs in glial cells in the pons.
DIPG
DIFFUSE INTRINSIC PONTINE GLIOMA
DIPG predominantly affects children, typically between the ages of 5 and 10. The average life expectancy of a child after they are diagnosed is 9 months. The typical treatment for DIPG involves radiotherapy, however it is only palliative. Trials are the only hope for children diagnosed with DIPG, and current trials are only in the first stages of testing. The criteria for a child to enter into a trial is strict and exclusionary, not to mention also very expensive, these costs along with travel costs are often out of pocket costs. Acceptance into a trial is not easy and there are only a few trials running worldwide. 60 year old adult medications are being used to treat children with DIPG/childhood Cancer and these medications are harsh and damaging. Long-term effects are unknown and not studied.
The system that was created to protect, treat, monitor and rate the DIPG/childhood Cancer was developed in the 1960's and it has remained mostly untouched for 6 decades. DIPG/childhood Cancer numbers are raising but the system meant to treat, protect and support our most vulnerable, remains just like it was in the 1960's. Parents are forced to watch helplessly while their child becomes a prisoner in their own body.
Symptoms of DIPG are usually rapid in onset and development. Common symptoms include:
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Eye problems, such as blurry vision, seeing double, uncontrollable or odd eye movements
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Trouble with walking, muscle coordination or balance
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Droopy eyelids or drooping on one side of the face
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Difficulty chewing or swallowing
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Weakness in the arms or legs
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Headaches, especially morning headaches and headaches that improve after Vomiting
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Nausea and vomiting
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Slurred speech
