This project focuses on the quality of life of children surviving brain tumours. This study is especially relevant to children with tumours near the hypothalamus for whom current therapies are inadequate to better the long-term, life-limiting, conditions.
These co-occurring conditions include severe obesity, diabetes, hormone deficits, neuro-behavioural and sleep disorders, chronic fatigue, poor reproductive and vocational outcomes, and visual impairment.
Manuela and her research team hope that this study will give voice to survivors of so-called “benign” brain tumours (that are rather “malignant” by location!) and for whom high survival rates are compromised by high morbidity and impaired long-term quality of life from the burden of hypothalamic damage. This is caused by disease location and regrowth and by the recurrent long-term chemotherapies, surgeries and radiation, necessary to effect “cure”.