“Having tuberculosis in the brain is so painful. Sometimes I just wish I could cut off my head and put it to one side.”
Johnny Islam, 29, is from Leyton in east London. Although having TB in the brain is rare, the disease itself is not.
Once deadly in the Victorian era – when it was known as the white plague – it is often assumed that tuberculosis has long since been eradicated.
But there are so many cases in London that the city is known as the TB capital of Western Europe.
Having the disease has changed Johnny’s life. It could cause long-term damage, or even kill him.
“I’m scared to go outside, I’m scared to do things on my own because I can blackout at any time.
“It can spread to any brain cells, it can damage your memory, and I forget things all the time.
“Everyone is going to die one day. This disease could kill me, anything can happen.”
The most recent data on infection rates show parts of London still have higher rates of TB than in some developing countries, such as Iraq, Libya and even Yemen.
It is a bacterial infection, which mainly affects the lungs, but can target any part of the body. It is curable in most cases.
TB in the lungs is spread through inhaling tiny droplets containing the bacteria, from the coughs or sneezes of someone infected with it.
Johnny’s condition is rare and complex, and he’s been taking a combination of 12 antibiotic tablets for more than a year.
He’s involved in video observed treatment – which involves him recording himself taking his medicine on a smartphone, and then sending the recording on a secure server to his health care workers, so they know he’s sticking to the treatment.
The first-ever trial of this method was carried out by University College London, in collaboration with University College London Hospitals. It saw patients recording themselves taking their medication daily using a dedicated smartphone.
They then employ a custom app allowing secure upload to an NHS-approved server, for remote viewing by a trained observer.
The trial’s been described as a potential game-changer in the fight against tuberculosis in the UK.
The preliminary results show more than 80% of patients completed the treatment using the technology, which paves the way for it to be used in the most complicated cases, such as Johnny’s.
Millions have been invested to try to eliminate TB as a public health problem.
There were 5,758 new cases of active TB in the UK, in 2015 – and almost 40% of those were in London.
Recently there’s been a fall in overall cases, but those involving the most at risk and difficult to treat, such as people who are homeless, abusing drugs or in prison, are rising.
Finding active cases is the first challenge – the next is getting them to stick to the long treatment, which involves a minimum of six months on a combination of antibiotics.
Patients often stop midway, which can cause a relapse and strains of the bacteria to become resistant to drugs.
Experts hope the video-observed treatment might help with this.
Dr. Alistair Story was involved in the video trial and said that if it “works for TB, it works for other conditions”.
“With the emergence of drug-resistant strains of bacteria, we think this has an important role to play to prevent the spread of the disease.”
Johnny is now nearing the end of his treatment.
“I have so many side-effects from all the medicines I’m taking. I’ve been losing my hair, and my left leg stops working sometimes.
“It’s been difficult to stick to the treatment, but I hope it’s worked and I can finally be TB free.”