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Pearl Stonelake says she would have beeen diagnosed sooner if there was more awareness
A woman who caught tuberculosis and “nearly died” says the illness could have been diagnosed sooner had there been more awareness.
One of Pearl Stonelake’s lungs collapsed and she coughed up blood when she suffered with the bacterial infection. Speaking today on World Tuberculosis Day, Pearl said irreversible damage was done when the infection went undiagnosed for years.
Despite being in decline in the UK since its peak in the 1700s, it is still the 13th leading cause of death worldwide, killing 1.6 million people in 2021, reports Devon Live.
It spreads similarly to COVID-19, making it the second leading infectious killer after Covid itself.
The disease eats away at the lungs and can spread to other parts of the body; the brain, spine, kidneys and even skin if left unchecked.
Treatment also comes with risks and is a gruelling experience, according to Pearl.
Pearl, from Torquay, Devon, said: “Because the drugs lasted six months I was unable to go back to work.
“I was able to go out after four weeks but because my lung was so damaged I was really breathless and I was coughing blood.
“I was in a real mess and I thought I was going to die.
“It took me a long time to get through it and I just think, you know what, I am a positive person, maybe I got this so that I can just save at least one person from dying by making sure people know about it.”
Pearl’s TB caused one of her lungs to collapse.
A recent CT scan revealed that her lung remains damaged and will most likely stay this way for the rest of her life.
Pearl taking a CT scan in hospital
But Pearl believes that it does not have to be this way for other people.
She believes doctors are not wise to the possibility of TB and often, like in her case, it is thought to be something else and not treated correctly until serious damage is done.
After going to the doctor for five weeks about a persistent cough and being given dose after dose of antibiotics, Pearl said the problem was still not going away.
On a referral to hospital, Pearl said that doctors still didn’t know what was causing her cough and breathing difficulties.
She said they diagnosed pneumonia but missed the fact Pearl’s lung had collapsed.
She said she was sent home from hospital but still thought something wasn’t right.
Pearl said she was admitted to hospital again for four days where tests found a tumour and fluid in her lung which was thought to be cancerous.
It was only after multiple tests that a doctor thought to do a TB test – months after the original problem had started.
All the while damage was being done and Pearl had been highly infectious with it.
The tumour turned out to be caused by TB, not cancer.
Pearl believes much of her ordeal could have been avoided had a simple TB test been carried out months earlier.
Pearl said TB tests were specific to the disease and standard testing was not sufficient for detecting it.
She urged anyone with symptoms to ask for specific TB tests.
Finding out early with a simple test is a lot cheaper for the NHS than dealing with full-blown TB as well, Pearl added.
Some of the drugs Pearl had to take
Pearl said: “I want people to know that if you have an ongoing cough that doesn’t go away please ask for TB testing.
“There is no way of killing the TB with normal antibiotics that we use.
“It has to be a concoction of special drugs and they have to be very well educated on them about how you can’t miss a single dose, how to take them, which foods you can eat with them, have your blood pressure taken. All sorts of things – it’s nasty.”
Pearl described the dangerous effects of the drugs used to cure the deadly illness.
She said: “The medicines we have today are still the same ones we had 100 years ago.
“The medication you have are really toxic drugs.
“The doctor said to me: ‘I’m going to give you these drugs, you have to take them every single day without fail because if you become immune to them because you slip up there is nothing else we can give you. You will die.’
“He also said to me ‘I know it’s scary and I have to tell you this.
“These drugs are so toxic that when we give them to you you have to have an eye test because you can go blind.
“You have to have a liver test because you can go into liver failure.’
“I had no choice, I was going to die anyway without the drugs because I had TB.”
CDC explains how tuberculosis can be transmitted
In 2021 the death rate of the disease was 10 per cent with 10.6 million people being infected, despite the disease being preventable and curable.
Multidrug-resistant TB (MDR-TB) remains a public health crisis and a health security threat.
Only about one in three people with drug-resistant TB accessed treatment in 2020.
The disease is known to affect certain types of people more than others and those with HIV are particularly at risk.
UK government data shows that people born outside of the UK are also more likely to contract it.
People like Pearl who don’t fall into these categories can fall through the cracks.
She said: “That’s the attitude people think. They think you have to be in London, you have to be black, you have to have HIV, and you have to be homeless. That’s what doctors think but we don’t think that with Covid do we, and it’s spread in the same way.”
HIV lowers the immune system making people more susceptible to contracting TB.
WHO reported that 187,000 of the 1.6 million who died of TB in 2021 had HIV as well.
In England, there were 11,901 TB notifications by UKHSA from January 2020 to September 2022, government data shows.
The South West region has consistently had the second-lowest notifications in the country, with the lowest being in the North East region and the highest being in London.