"Im lucky to still be alive. But had I been tested earlier, I could have avoided the long term effects on my brain and motor skills."
Roland Chesters, who has released a book
A man who was given just two weeks to live after being diagnosed with HIV is urging others to get tested early - and protect their long term health.
Roland Chesters, from Accrington, had symptoms for over two years but doctors did not know was wrong with him.
His calls come in the wake of the government’s annual report on HIV/AIDS in the UK, which has found nearly half of those diagnosed are still at the late stage of infection.
Late diagnosis cuts life expectancy and impacts on a person’s quality of life. People living with undiagnosed HIV are also at risk of passing the virus on to partners.
Roland, 59, said: “I had been very poorly for a long time. I had suffered loss of movement in my arms and legs and the ability to speak, dizzy spells, tiredness, under-performance at work and confusion.
“I thought I was going mad because I’d seen numerous oncologists, cardiologists, psychologists and a neurologist, but they didn’t know what was wrong with me.
“I’m lucky to still be alive. But had I been tested earlier, I could have avoided the long term effects on my brain and motor skills.”
Roland and his partner of 22 years, Richard, had been planning to go on a two week holiday days after the test. But doctors warned if they did Roland would be ‘coming back in a box’.
Roland, a former Accrington Grammar School pupil, was diagnosed with HIV and an ‘AIDS-defining illness’ known as encephalopathy and includes symptoms of dementia.
Treatment
HIV (Human Immunodeficiency Virus) is no longer considered the death sentence it once was.
Early diagnosis and treatment means people living with HIV can expect to live as long as the general population – as well as reducing the risk of passing it on.
Roland had Progressive Multiofocal Leukoencephalopathy (PML), a degenerative disease of the brain which impairs cognitive and motor functions.
It usually affects people in the late stages of acquired immunodeficiency syndrome (AIDS) and has a five to ten per cent survival rate.
Early diagnosis and prevention of transmission
Roland had only had one other long term relationship and did not suspect he had HIV.
He said: “I was angry that what now seemed to be blindingly obvious symptoms of an HIV-related illness were missed.
“I thought I was going to die. It affects my concentration, coordination memory and I have some difficulties with speech.
“I was later diagnosed with dyspraxia, a coordination disorder, as a direct consequence of the encephalopathy.”
Roland is a modern languages graduate from the Royal Holloway College in London and he went on to work for the Foreign and Commonwealth Office as a language-testing specialist.
He added: “My verbal and written skills are no longer up to scratch, which is disappointing for someone with my background. This could have been avoided had I got an earlier diagnosis and treatment.”
He took five months off work to recover and was later diagnosed with Post Traumatic Stress Disorder (PTSD).
He said: “I was extremely depressed at the time. While the virus may have had less of an impact had I been diagnosed earlier, I am much healthier and happier today thanks to the treatment. I consider myself to be extremely lucky.”
HIV is treated with antiretroviral medication which works by stopping the virus replicating in the body.
The treatment can make a person's viral load so low it can't be detected by tests. When this happens, they cannot pass on the virus.
The drugs also allow the immune system to repair itself and prevent further damage.
Testing
In 2017 around 100,000 people in the UK received specialist HIV care. Public Health England, which is part of the Department of Health, reported 7,800 people are unaware of their infection and 43 per cent of those diagnosed are at the late stage of the infection.
Roland said: “People diagnosed and treated early can enjoy a long and healthy life and do not pass on the infection to others.
“Tests are carried out discreetly and there’s even the option to order a home testing kit online.”
Inspiring others
Roland has become a campaigner for disability rights. He heads Luminate, which offers support on disability and diversity in the workplace. He helps employers create an inclusive workforce and employees to develop confidence in their role.
He is also a speaker for the Terrence Higgins Trust ‘Positive Voices’ - going into schools, colleges and workplaces to talk about his experience.
Roland has released a book called Ripples: From the Edge of Life which looks at his experience of living with HIV and offers support for others affected by a life-changing diagnosis or disability in later life.
The book, referring to how the issues can have a ripple effect on everyone, also shows how education and awareness can tackle the spread of HIV and the stigma around it.
· For more information, visit https://www.amazon.co.uk/Ripples-Edge-Life-Roland-Chesters-ebook/dp/B07C4ZTXWT or https://luminate.uk.com/
