Arlene’s allies

Tuberculosis might feel like a disease from the past to many, but for nurse-turned-patient Arlene Rabvukwa, her diagnosis came as a shock. Beverley Hunt met Arlene and heard about the incredible support she received from KCHFT's TB Community Nurses, who helped her get back to living life. 

Arlene never imagined she would become a patient in her own hospital.

That was until the 34-year-old nurse from Gravesend was rushed into A&E, struggling to understand her mysterious symptoms of weakness and lethargy. The diagnosis was one she hadn’t in her life suspected – Tuberculosis (TB).

"I’d been feeling tired and run down for months. It was a mystery, “said Arlene. “I just kept getting weaker every day.  I was in hospital for two weeks when the TB Community Nurses came to see me and explained they would be looking after me. That moment changed everything."

Arlene, who worked at the same hospital where she was diagnosed, was prescribed a combination of antibiotics and received regular blood tests and x-rays to monitor her progress.

Though treated at home, she was too weak to get out of bed for the first three months. During this time, the TB Community Nurses became her lifeline, visiting every few days.

The TB Nursing Service is a dedicated team of nine specialist nurses working across east and north Kent. Their role goes beyond just treatment, helping patients overcome barriers that might stop them from completing their medication and trace any close contacts who may have been exposed.

"It was incredibly tough. As a nurse, I'm used to caring for others, but suddenly I was helpless and bedbound," Arlene said. "I lay there questioning everything - what had happened, how did I catch it, what it meant for my future. TB is one of those diseases you don’t really hear about anymore.

“Our plans to start a family had to be put on hold, holidays were cancelled and life as we knew it stopped. But the TB nurses didn’t just treat my illness; they supported me through every fear and uncertainty."

The impact on her family was devastating. Some were treated for latent TB, where the TB infection lies dormant in the body and if not treated, could lead to active TB in the future. Arlene’s husband had to stop working to care for her, putting a strain on their finances.

Arlene said: "The nurses stepped in to help us access support financially. They knew I struggled to walk, so they made sure my appointments were quick, so I was in and out in no time.

“Having been a nurse myself, I know what drives us is the desire to help others. I felt that completely when I was at my lowest. I could never repay them for what they did."

Nicola Holmes, one of the TB nurses who cared for Arlene, said: "Arlene had been very unwell, but her dedication to her treatment was incredible. We saw her grow stronger every day."

Though Arlene has completed her treatment, she has lasting lung damage and will need ongoing care from the NHS Respiratory Team.

"I’m still receiving treatment for neuropathy - pain and numbness in my hands and feet caused by one of the TB antibiotics - but I’m slowly getting back to good health and I credit the TB nursing team, my family and work colleagues for getting for that."

Arlene has returned to work, though now from home in NHS administration. "It’s good to feel independent again and use my skills. I still get very breathless - just walking up the stairs or even when I step outside. Winter was quite tough and catching viruses really wiped me out. I’m not sure if I will get back to where I was before, this could be my new normal now."

But she has also found a new way to help others. "I started a TikTok account to spread awareness of TB symptoms and treatment. It’s been a great outlet for me, and I hope it helps others going through this."

Although TB rates are low in Kent, some people are at higher risk than others. TB continues to be associated with deprivation and tends to be more likely to affect those experiencing homelessness, drug and alcohol dependency, or contact with the criminal justice system. People who come from countries where TB is common are also more at risk.  But, as Arlene’s story proves, anyone can be at risk.

Nicola’s message is clear: "TB is still out there and can make people seriously ill. Reported cases in England rose by 11 per cent in 2023 compared to the previous year. If you have a cough that hasn’t gone away for three weeks or more, or any of the other symptoms, get checked by your GP."

March 24 every year is World TB Day. This celebrates the day Dr Robert Koch announced that he had discovered the bacterial cause of tuberculosis. This discovery led the way to diagnosing and curing TB. Despite being easily treatable with antibiotics if caught early, TB causes more than one-and-a-half million deaths every year — mostly in developing countries.