Gliomatosis Cerebri

Gliomatosis cerebri is an extremely rare type of brain cancer. It only strikes about 100 people a year, and it comes with a very poor prognosis. It does not form a mass like a traditional tumor.  Instead, it is made up of cancerous threads that infiltrate areas of the brain and spine. Because the tumor is so diffuse, surgery is not an option. Gliomatosis cerebri can infiltrate different lobes of the brain, so symptoms vary from case to case.  In Allie’s case, the tumor presented as a seizure, and it had already infiltrated the bilateral thalami, basal ganglia, bilateral caudates, bilateral temporal lobes, and limbic system.

Allie’s Symptoms

• Voracious appetite/weight gain (hypothalamus obesity)
• Partial facial paralysis
• Seizures
• Headache
• Short-term memory loss
• Weakness and numbness in the limbs
• Trouble sleeping

GC Registry

The Children’s Brain Tumor Project launched the International Gliomatosis Cerebri Registry in 2014. This is a collaborative effort to track gliomatosis cerebri cases worldwide and aggregate data.  Allie was added to the registry in May of 2014 with the help of a nurse from Weill Cornell.  This huge organizational effort ensures that future families affected by gliomatosis cerebri will have a central place to find more information about this extremely rare tumor. Visit the GC Registry website for more information.

Gliomatosis Cerebri International Registry Website