Brighton drag queen's devastating brain tumour diagnosis

Edward Ruggiero was living in Brighton and working as a drag queen - and as Eddie OK Adams he had even come third in a pilot audition for what was to become the popular reality TV show Ru Paul’s Drag Race back in 2015.

But two years later Edward suffered a seizure and was rushed to hospital during the weekend of Brighton Pride.

Following several scans, he was diagnosed with a rare malignant brain tumour known as an anaplastic astrocytoma.

Edward was working as a drag queen in Brighton when he was diagnosed

In November 2017 Edward underwent a craniotomy operation on his brain while he was awake - the preferred method for surgeons to remove tumours close to certain regions of the brain, to avoid damage.

But Edward suffered a life-threatening infection two weeks after the procedure which meant he needed further surgery to remove part of his skull, leaving his head misshapen.

Edward also has permanent hair loss as a result of treatment, but chose not to continue with a punishing chemotherapy regime.

He was given a prognosis of between three and five years and now feels he is living on borrowed time.

Edward Ruggiero before his diagnosis

The 33-year-old, who had to move back to his family home in Bedfordshire following his diagnosis, said: "It seems so brutal that, in a world in which we have achieved so many things, the only treatment for brain cancer is to cut it out by surgery, burn it with radiation and poison it with chemotherapy.

“With such a limited life expectancy, why would I waste any of that precious time putting myself through more horrific treatment for the sake of a few more months?

"Some days it’s as much as I can do to get out of bed and that seems pitiful for a 33-year-old man at what should be the prime of my life.

"My brain tumour has robbed me of my career, my prospects and, ultimately, it will rob me of my life.”

Edward is among more than 112,000 people affected by brain tumours who are demanding action from the government to fund greater research to help find a cure.

They have signed a petition created by the Brain Tumour Research charity calling for increased investment in scientific research and equal funding to research for other cancers, such as breast cancer and leukaemia.

Edward had to have surgery to remove part of his skull, leaving his head misshapen

Edward's story is included in the charity's Level Up and Stop the Devastation report being shared with MPs today, which highlights how brain tumours kill more children and adults under the age of 40 than any other cancer.

Historically, just one per cent of the national cancer spend has been allocated to the devastating disease.

Edward's mother Julie said: "Edward has told me he isn’t afraid of dying but I am terrified to think about life without him.

"It seems so unfair that brain tumours kill more people under 40 than any other cancer.

"How can it be that there are so few treatments?"

Sue Farrington Smith MBE, chief executive of Brain Tumour Research, said: “Now is the time to give hope to the thousands of families impacted by a brain tumour every year.

"Along with more than 112,000 people, I am calling on the government to make this the time to level up and stop the devastation.”

To find out more or donate to the charity, visit www.braintumourresearch.org.