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- Carl Windsor
Info on The Neuroblastoma Society
28 Sep 2010 | Filed under: personalThe Neuroblastoma Society was founded in 1982 by parents and friends of five year old Matthew Oldridge, who was dying from Neuroblastoma.
The Society is a voluntary one, and it purpose is to raise funds for research into the disease to improve its diagnosis and treatment, as a lot of children are initially misdiagnosed, due to consultants not knowing enough about the disease.
Neuroblastoma is a particularly aggressive form of cancer that forms in the nerve tissues. It most commonly occurs in one of the adrenal glands in the abdomen, or in nerve tissues alongside the spinal chord in the neck, chest, abdomen or pelvis.
The symptoms of the disease are very vague and can be often misdiagnosed, as they include tiredness, loss of appetite and aches and pains in bones or tummy, depending where the tumour is.
Unfortunately Matthew was misdiagnosed to begin with, and when the consultants realised he had neuroblastoma, he was already at an advanced stage 3.
Less than 100 children a year are diagnosed each year with neuroblastoma in the UK, and most of them are younger than five years old.
Treatment for neuroblastoma has drastically improved since 1982, and it includes chemotherapy, high-dose chemotherapy with stem cell rescue, radiotherapy, and monoclonal antibody treatment.
The treatment is very intense and often requires the child to stay in hospital over long periods of time.
The Neuroblastoma Society, as well as raising money for further research, also aims to create a greater awareness of the disease to avoid misdiagnosis’ being made, so there is a greater rate of survival.
The Society also offers a befriending scheme for parents and families of those affected by neurobastoma.
Over 95% of all donations to the Society go directly to fund research into neuroblastoma.
