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Losing Myself report reveals the hardship and isolation faced by brain tumour patients

Thousands of brain tumour patients in the UK are struggling to cope financially and emotionally in the face of ignorance about the disease, says a report out today (Monday July 20).

Please note that the content of this report may be upsetting, especially if you or a loved one are currently living with a brain tumour and you may not wish to read it.You can call our Support & Info line on 0808 800 0004 (Free from landlines and most mobiles).

Losing Myself: the reality of life with a brain tumour, reveals that many people living with a brain tumour are robbed of their sense of identity, their independence, their ability to work and their relationships.

Four out of ten have had to give up work entirely and half experience financial difficulties following their diagnosis.

Three quarters feel awkward in social situations, with some saying they fear being labelled ‘drunk’ or ‘stupid’ because their balance or speech is impaired.

The report, based on the responses of more than 1,000 brain tumour patients, is the most comprehensive study of its kind undertaken anywhere in the world.

An estimated 55,000 people are living with a brain tumour in the UK, with 25 new cases diagnosed every day.

Losing Myself, produced by The Brain Tumour Charity, says:

  • One in three is severely isolated
  • One in three exhibits personality changes – compared by one respondent to a ‘Jekyll and Hyde’ experience
  • Nine out of ten have emotional or mental health problems
  • Two out of three have relationship problems, with three quarters reporting reduced physical intimacy
  • One in three has sight problems
  • A quarter experience seizures
  • Nine out of ten have become more reliant on others


Losing Myself – PDF

This report outlines the daily struggles faced by the majority of those affected and contains statistical information and accounts of daily life that some people may find distressing.