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AmitahIt started when I was in the second year of my nursing degree. I was an active girl and things were going smooth. Then, during the COVID surge, I started getting a mild fever. As a nursing student, I treated it myself.

Then it started to get out of hand and my friends noticed I was unwell. I went to a doctor and was given antibiotics and fever reducing medication. I was also told to isolate for 14 days due to fear of the pandemic. After this period, I was still unwell and I was hospitalised on in May 2020.

Lots of tests were carried out and I was given different antibiotics to see which worked, none of them did. Finally, I was taken for a CT scan which showed a small swelling in my intestine which was followed up with an inconclusive biopsy. The doctors were puzzled, and I had yet more rounds of tests in every department, and treatment trials hoping that something would work.

I was scared. I began losing hope and was afraid of the results.

My heart began to race due to inflammation and my fever continued. My lymph nodes and thyroid were also inflamed. A second biopsy finally gave me a diagnosis – multi-drug resistant TB (MDR-TB).

It shattered me to the core. My diagnosis was also a shock to my family – particularly as we were already struggling with my grandmother’s cancer diagnosis.

I was finally discharged after 108 days of hospital treatment, but this was not the end. I had lost many hours of training and my ongoing illness was tiring and put me at risk in clinical settings. I also needed injectable antibiotics for a further six months.

I took the challenges and sat my exams the same year. This journey had raised the bar for my endurance.

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When I woke up one night in November with a severe headache, I thought nothing much of it. I took paracetamol.

Nothing seemed to get rid of the headache though and it was a bit annoying. This went on for two weeks then suddenly the headache went. I felt a bit under the weather but nothing that I took seriously.

Gradually though, over the coming weeks, I started to feel cold, then hot, irritable, short tempered and I starting to go off food (which was unusual for me).

Christmas time came and I was getting worried. I didn’t know what was going on. I built up the courage to ring my doctor and tell him my symptoms, he sent me for blood tests. I was told to return if my condition worsened. Two days later I was back at the doctors as I was not eating, the thought of eating food make me sick, and I was losing weight. The doctor didn’t know what was wrong as my blood tests came back normal apart from the COVID-19 antigen test which came back positive.

I was told I probably had long-COVID, but I wasn’t happy with this as the symptoms I was having didn’t seem to match. I mentioned to the doctor that I had TB when I was 18 months old and the symptoms seemed very similar.

The doctor rang the TB clinic for advice and they said they wanted to speak to me the following day. I was spoken to by a TB nurse and she told me I had to come in to the clinic straight away where I was sent for an xray. When the consultant looked at the xray, I was told that it didn’t look like TB but to be on the safe side I was sent for a CT scan. The scan did show TB.

I was admitted to hospital for four days and given all sorts of tests. I was given medication and sent home on the 4th day. The following day I was home visited by a TB nurse, she was talking me through the medication I was given. My wife mentioned to the nurse that I was acting and walking strangely. The nurse asked me some basic questions then suddenly said she was referring me back to hospital straight away – I was having a stroke!

I was admitted to hospital in early February. I had another two strokes and there was a point where the doctors contacted my wife to say that they didn’t think I would make it. I was diagnosed with TB meningitis – TB around the brain or spinal cord. I was in hospital for a total of 12 weeks and I have no recollection of the first three.

It was hard because I couldn’t see family because of the covid situation. It was especially hard for my three children as they thought I would die in hospital and that they would never see me again. My wife was amazing. She had just lost her dad and we were moving house and also home schooling. Now she also had the worry of losing me. She stayed strong for us all, I know how hard she had it.

My whole family had to go through tests for TB. The children had a TB vaccine. When I left hospital, I had lost three and a half stone in weight and I suffered muscle wastage. I was very weak and awfully tired. I went back into hospital four more times for a week at a time.

I was referred to a speech therapist as I had memory loss, speech difficulties and frustration about what had happened to me. I was off work for nearly 12 months.

I came to the end of my treatment in February 2022 after being on eight tablets a day for 12 months. I want to say a massive thank you to my GP and all the TB nurses and consultants who treated me. But the biggest thank you goes to my wife who nursed me through this terrible disease.

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Remember, remember the 5th of November…. I’ll never forget the date I was told I was suspected of having tuberculosis. To the noise of fireworks exploding in the damp, dark dusk I walked home from hospital in a state of bewilderment and shock. How could I have TB, that Victorian disease which killed off Nicole Kidman in Moulin Rouge? No one in the UK got it anymore. Plus, I felt fine. OK, so I’d had a bit of a cough on and off for almost 10 months, but I was fit and healthy.

There’s never a good time to find out you have pulmonary TB, but for my boyfriend and me the timing was perfectly awful. All year we’d been planning our “epic-six-month-adventure-around-the-world trip”. With ten days to go before our leaving date we’d handed in our notice at work, put our flat up for rent and bought the flights. And yet, here I was, being told I was potentially highly infectious and shouldn’t even leave my flat, let alone the country!
The coughing had started in February, after a spell of feeling under the weather. My local GP told me to take it easy and get back in touch if it hadn’t stopped by Easter. When I went back, the cough was dismissed as a lingering virus. I was seen by a total of six doctors over nine months and each one dismissed the cough as a minor irritant.

In hindsight, I think the doctors all saw a healthy, white, 29 year old female and, as I didn’t fit any of the stereotypes, a diagnosis of TB never crossed their minds. As my leaving date drew closer, I became increasingly frustrated that the cough was worsening. Finally after visiting an asthma clinic, I was referred for a chest x-ray.
I fully expected the x-ray to come back clear. But after checking my x-ray, I was immediately referred to the on-site TB clinic, where tests showed I definitely had TB! That evening, instead of leaving drinks with friends, I was reeling once again – I really did have tuberculosis.

A strict regime of nine pills a day began, alongside blood tests to check my cell count and liver function.
The next three weeks were easily the most stressful time of my life. I was still infectious and didn’t want to risk infecting anyone else so I stayed quarantined at home without a job. I wasn’t sure what I was more worried about – being homeless, being unemployed, travel worries, having TB or the potential side effects of the treatment.
The TB team were immensely reassuring and gave me clear information from the outset. I was shocked to find that TB is still one of the biggest killers worldwide and that diagnoses of new cases in London has been increasing steadily in recent years.

After three weeks of medication, my consultant told me I was responding well to treatment. I was no longer infectious and, as long as I maintained the regime of pills religiously and had regular check-ups, I was free to go abroad. So off we went, backpacks weighed down with my medication. We had an amazing adventure, climbing volcanoes in New Zealand, scaling peaks in Patagonia, visiting Machu Picchu at dawn and salsa dancing in Colombia.

I thought about the TB every day but, while I sometimes felt a little nauseous after my medication and had joint pains in the first few months, it didn’t impede me in anything I wanted to do. The coughing stopped after two months and soon the only way of telling I was recovering from TB was the medication I took without fail every morning.

Back in the UK another chest x-ray showed my lung had partly healed, although I still have some scarring that may never fully disappear. Now I’ve stopped medication, feel well and have been training for a 10km race to give myself a fitness goal.

I’d advise anyone who finds out they have TB – remember there is a cure, you just need to be patient, follow medical advice, take the medication daily and know that it doesn’t have to ruin your life.

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Telling your children you have TB can be a very difficult moment. They’re likely to be worried for you and you have to explain that they may have to undergo screening to ensure they do not have TB themselves. Luckily for Samara, who works at a supported accommodation project for homeless people, telling 12-year-old daughter Nevaeh about her illness was not as bad as she thought.

“I am really lucky. My husband, Marc, and my daughter were brilliant throughout it all. When we first found out that I had TB we were unsure whether or not to talk to her about it.

“Nevaeh is 12 and intelligent so we knew the first thing she was going to do was Google ‘TB’ and it was just about making sure she had the right information about it.

“I was actually diagnosed on Christmas Eve. I was given the news over the phone by my GP. He said it looks very much like it is TB and that I was booked to see a consultant on New Year’s Eve and… Merry Christmas! I spent the next seven days not knowing what it all meant.

“The doctors first thought my symptoms were asthma and I was given inhalers beforehand. I was diagnosed with pulmonary TB after numerous tests and referred to Blackburn Royal Hospital. When I found out it was TB I told my daughter it was a lung infection. She asked if it had a name and I said: ’It’s really long one. The easiest thing to call it is TB. I need to tell you quite a few things about it and I’d rather you listen to me than go away and look at stuff yourself because the internet doesn’t always have the correct facts.’

“Of course she was Googling! I knew that she had been Googling ‘lung cancer’ and all sorts of things like that as well. So I think it was definitely the lesser of two evils to tell her I had TB.”

“It’s quite aggressive treatment, though, and I was really poorly with it. I assume most people have the same sort of treatment. The Isoniazid (a TB antibiotic) made me feel worse than my TB symptoms.

“I ended up being off work for about 10 weeks because I lost a lot of weight, couldn’t eat, had a terrible rash. The TB team were brilliant. Everything that happened they managed to combat it with something else.

“When I went for my first check-up they realised I had been resistant to the medication, to one of the antibiotics. So the second round of treatment added another nine months. All in all my treatment is a 12-month process.”

Samara has always been very healthy, often running and exercising. That’s why she took on a fundraising challenge for TB Alert even during her treatment.

“GMTV were asking for ‘tough mums’ to apply to do this Tough Mudder event. They wanted people who had a bit of a story. Feeling a bit sorry for myself and thinking ‘I could have done that six months ago’ I thought ‘well why can’t I do it now?’

“I wanted the opportunity to show my family that I can be strong again, that I can beat this; that TB is not going to debilitate me.

Samara really is a tough mother, she has completed her TB treatment and has raised hundreds of pounds for TB Alert too!

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TomWhen Tom was admitted to hospital he had an excess of fluid around the lungs and inflammation around the heart. He dropped more than two stone in two weeks. Tom was unable to get out of bed and did not want to eat. He also felt cold and shivery, despite sweating constantly.

“The normal treatment for inflammation around the heart [a condition known as pericarditis] wasn’t working. The doctors were beginning to panic and so was I.”

“After a brain-storming session, the doctors and specialists  decided to put me on treatment for TB even though the test was inconclusive.”
Tom recalls that doctors listened to his heart for signs of ‘pericardial rub’ – the sound of friction between the two inflamed layers of the pericardium.  His chest was regularly drained of fluid.  At this stage, he was unable to walk the few yards from his wheelchair to the x-ray equipment without help.

“I was put on Pethadin to stop the pain, so I was extremely euphoric when I got it and very scared and grumpy when I didn’t. The nurses even brought in their home cooking to get me to eat again – bacon rolls and dumpling.

“The TB treatment began to work even though I had to suffer a few side effects, and I began to put on weight again.”

After 5 weeks in hospital, Tom was able to get around quite well. He was discharged to recuperate at home.  It was later discovered that Tom had been exposed to TB by a workmate with active TB; though the medical team told him that the type of TB he himself suffered, pericardial TB, was very unusual.

“After 5 months I went back to my job as a painter although this was really too early. I had found the whole experience too much and felt quite isolated and depressed, therefore a return to work and real life felt absolutely necessary at that time.”

Tom suffered some scarring around the lungs, but managed to find some positive sides from his experiences:

“I managed to give up smoking and I was a much more mature person, so I was luckier than some.”

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AmyAs a young law student, Amy’s attention was on studies not TB. She thought the BCG vaccine she’d had as a child would protect her from what she considered a ‘disease of the past’. Not knowing the symptoms of TB, she was never on the look out for it when she got ill.

These factors, and the delay in diagnosis, led to Amy’s TB becoming life-threatening.

“In April 2004, I got antibiotics from the doctor for a dry itchy cough. I was a busy 24-year-old law student and thought my illness was just stress about my studies.

“But over the next three months the cough got worse and I lost a stone, so I went back to the doctor and got more antibiotics. The only person who mentioned TB at this stage was my uncle, but I didn’t take it seriously, as I’d had my BCG vaccine.

“From September to December 2004 I got more tired but carried on. When I went home for Christmas everyone noticed my weight loss. My Doctor referred me to hospital. Around January 2005 I started to get night sweats.

“My hospital appointment took six weeks to come through because the first letter was lost. I had an x-ray but heard nothing. Then, in April 2005, the hospital did a bronchoscopy and sputum test and I was diagnosed with TB. By this time I’d dropped from 8 to 5 and a half stone. I was put on TB treatment.

“I have to admit that I didn’t start taking the tablets for three weeks because I was so scared of side effects that I’d read about and that the nurse had told me. I thought these were really common.

“A month after my diagnosis, an x-ray showed that one of my lungs had collapsed. A couple of weeks later I was in hospital for two weeks and given physiotherapy to help my lung. I finished my treatment in January 2006 and was given the all clear.

“About a month later red circles appeared on my legs, so I went to the county hospital. My heart rate was high. A consultant took samples. I heard nothing for three weeks, so I called and was told that they’d lost my notes. I persevered and returned to my doctor who gave me more antibiotics. My cough came back and I began to feel sick, tired and lost weight again.

“That May I went back to my doctor and was given an emergency appointment for the chest clinic – but before this came up I was admitted to hospital with a pneumonia-related infection where they found that my TB had re-occurred. Because my lung had collapsed not all the bacteria had been killed off. In May 2007 I had an operation to remove my lung.

“Thanks to my family, friends and medical staff I’m getting better and catching up with my studies.

“When I was diagnosed with TB I was surprised, as I thought it was a Victorian disease but I was also relieved because I thought it was asthma. I didn’t think I could get it because I’d had the BCG vaccine and wasn’t coughing up blood. Now I know what signs and symptoms to look out for.”

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NatalieNatalie, a young mum with two young children, was relieved when she was told she had renal (kidney) TB, because she finally knew what was wrong with her and that it could be cured.

“In 2004, while pregnant with my first son, James, I started getting pains in my kidneys. At first the hospital thought it was appendicitis but they couldn’t find anything wrong. I was in hospital for about a week, but when nothing was found I was told it was a pregnancy related illness and sent home. I was told to take Paracetamol for the pain. After James was born I kept getting what they thought were urinary infections. They gave me antibiotics but it didn’t seem to make me any better. In 2006, when I was pregnant with Thomas, I went into hospital again with kidney problems. They said it was pregnancy related again.

“By this time I could hardly walk. I was scared the doctors wouldn’t believe me. Sometimes I just didn’t bother going because it never seemed to get anywhere. The nurse practitioner was the only one who listened. I said ‘I know my body. I know there is something wrong. It shouldn’t hurt that much.’ It was the nurse who eventually tested me for TB; she didn’t even know it could be somewhere other than lungs, but she had tested me for everything else and a doctor she knew suggested she tested for TB. She said you’ve had BCG so you won’t have TB. But I did.

“I was told I had TB in my kidneys, when I asked what would happen to me they said that it was curable. So I didn’t panic, thinking that I would die or anything, I just got on with it. Finally knowing I had TB was in some ways a relief;­ at least it was curable.

“I was on my antibiotics for six months altogether. I found it really hard taking my medication. I don’t like taking tablets at all.

“And I didn’t like the side effects. I felt sick and got heart burn and a rash all over my face. And I had this horrible smell that I couldn’t get rid of. I thought my house smelt. I disinfected everything, I was really ashamed if anyone came round. But it turned out only I could smell it. The nurse said that was a side effect; it was just the tablets.

“A few times I would think ‘today I won’t bother to take them’ but then I would look at my kids and think, ‘no, I’ve got to’, because my doctors had told me that if you don’t take all the medication you are more at risk of your TB not being cured.

“You know, you don’t get TB from being poor; you don’t get it for any other reason than you just happen to get it – that’s just life. But it is curable, that’s the main thing, because a lot of people think you die from it, straight away. But you don’t obviously. I’m still here!

“Now I am fully recovered, I volunteer for TB Alert educating medical staff and the public about TB.”


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ImlaAs a fitness trainer, and having an interest in alternative therapies, Imla was probably more focused on the mind and body than most people. But that all changed in 2005, when in just eight months he went from cycling 20 miles a day to walking with a stick. Looking back he says the mental challenge of his illness was equally exhausting.

“The first thing I noticed was feeling tired. I was going to the gym every day but it was making me weaker; it wasn’t making any sense. When I first went to the doctors they treated me for flu but I just kept getting more tired. By my third visit, I couldn’t ride a bike on the flat road without getting exhausted.

“Luckily, I saw a different doctor who decided to send me for x-rays. That was when they found a shadow on the right side of my lungs. It wasn’t long before I was passing blood, had lost a lot of weight and I was starting to black out. It got to a point where I needed a walking stick to support myself.

“Looking back now, I suppose I never admitted the reality to myself. There are plenty of things that I should have stopped doing, such as working, that put me in vulnerable positions. But not knowing what was wrong with me was difficult. I just kept ignoring how sick I was and tried to convince everyone around me that I was normal.

“There was too much confusion. I could see my body was shutting down but nobody could tell me what was wrong with me, and when I tried to tell people I was sick I didn’t know what to say. I started to think it was all in my head.

“I have to say, though, that during all of this time the medical staff that helped me were great and without them I wouldn’t be here. By this stage I was under the care of two different hospitals and was spending more time in the hospital than at home. I was being weighed weekly, having lots of blood tests and a nurse was visiting me every day. That’s when I started to get really worried.

“They went through this process of elimination until they decided I had lymphatic cancer. They took me to St Thomas’s hospital in London for an operation to remove my lymph glands. By this stage I was dying: I was on the terminally ill ward.

“It was only when they opened me up and took out some of my lymph nodes that they discovered it wasn’t cancer. When I came around the next day, the doctor said ‘you have TB’, but initially they weren’t sure how to treat it. I was put on 22 antibiotics a day. So there was relief knowing what I had was curable, and that I wasn’t going to immediately die! But there were concerns about how to treat it.

“I decided that I had to take the treatment because I was not going to get any better if I didn’t. On top of the medication I meditated every day, went on a vegan diet, and did a lot of spiritual work, and I used complementary therapies. Eight months later the doctor said I had been cured by the medication and I was 100 per cent fit. It took eight months to find out what was wrong with me and eight months for me to recover.

“Not knowing what was wrong with me was the hardest thing. You can’t help but question whether it is all in your head. Looking back it was a physical and psychological battle that I had to fight. It’s that thing of not knowing and if you don’t know then you can’t accept it and you can’t fight it. Knowing what you are fighting is half the battle.

“I was lucky because I’m really into the spiritual side of life, so I really submerged myself in it. That was what kept me going. I think you need to find something to keep you going, because it can sometime feel too easy to quit.”

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ArthensiaWhen Arthensia overheard her doctor discussing TB symptoms she said, ‘That’s it!’

It had taken a year to gain a diagnosis – Arthensia had been prescribed allergy treatment and had even attempted to treat herself with cold remedies. By this time, she had fluid in her lungs and stomach, and an enlarged liver.

“It began with a sore throat which lasted two weeks. I remember thinking that it was not like any sore throat I had experienced since I’d suffered regular bouts of tonsillitis as a child. It felt like my throat was always the first thing to be attacked.

“I got over this sore throat, but started to have symptoms of ‘nose to throat draining’. I don’t suffer with allergies, so it was unusual. I went to my GP and explained my symptoms. I was given Beconase. This went on for year and a half, with doctors giving me everything from nose drops to nasal sprays. I felt well enough, but the symptoms were uncomfortable and did not go away.

“Now I know that TB has cold-like symptoms, but at the time I tried helping myself with Benalin syrup to get rid what I thought to be catarrh. It seemed to work and my symptoms dried up. I was still referred to hospital for an x-ray though, as my GP worked to diagnose the problem. I suppose they were almost there, but not quite.

“The x-ray showed nothing, though I also had no physical symptoms either at this stage. However, I was soon experiencing tiredness and dizziness, which I thought was anaemia. My tummy became hard on one side; though it soon disappeared which I thought was weird.

“A month later, I started to experience a sensation in the left side of my chest; breathlessness and tiredness. As soon as I got in from work I led flat out, and sometimes fell asleep for a period. My tummy began to swell prominently around the naval area.  I went to my GP and showed her my stomach and mentioned the sensation around the left side of my chest. She checked me over but did not know what it was, so she referred me to hospital for a scan.

“I went home not really knowing what to do – by the end of the week I was worse. My tummy grew more. I was feeling cold one moment and then very hot. I went to the hospital.

“The doctor there asked if I’d come into contact with TB. I thought many things. I had already been vaccinated aged 14.  I overheard him going over the symptoms of TB with a junior doctor, I said, amazed, ‘Yes! That’s it!’

“I could not understand why my GP did not diagnose it – even when I stood there with the symptoms!

“In the later stages, when I looked at myself in the mirror, I was no longer the same person. I had lost a lot of body fat in a short time but my tummy looked like a woman who was six months pregnant. I had fluid in my lung and stomach and enlarged lymph nodes and liver.  My period stopped.

“Thankfully, I had gone to the hospital when I did because it all felt much worse after that.
Once I had the biopsy and it was confirmed they started my treatment. I was off work for eight months due to my health and appearance. I also had to have blood transfusion as I was badly anaemic. My weight was checked regularly and I received iron injections.

“I regained my weight, my appearance improved and my body did not hurt too much though my lungs were a little delicate. The lymph node behind my stomach will remain enlarged.

“There had been an increase in TB around that time, I heard, though it had not been made well known. Still, I felt my GP should have taken more interest in my symptoms. The head GP there said it should have been diagnosed.  I suppose he has seen many cases.

“What has to be understood is that you don’t have to travel to get TB, it is around and will always be around. And I say to anyone persist with your GP, I did, but not enough and nearly paid a price for it.”

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ManishaManisha would like to share her story, as the day she was diagnosed she had read the stories on this website, which gave her the confidence that she could fight through this. In 2013 at the age of 24 Manisha was diagnosed with TB, which was a shock as she’s an active person with a healthy lifestyle. It began with just a cough that became constant over time.

“I was given several courses of antibiotics, as they suspected a chest infection but in a short space of time I lost a stone and finally after three months later I was given a chest x-ray and it was identified that I had TB. Doctors were baffled as to where I had got it from and I’d had my BCG injection when I was born. I was signed off sick from work and I was given a six-month treatment. It was distressing to be told that everyone who has been in close contact with me would also need to be checked. My two-year-old nephew was straight away given a three-month treatment course even though he was clear but it was given as a caution due to young age. It was lucky that he didn’t have any side effects.

“Luckily all my friends and family were clear, but it was difficult to explain to some people that I was no longer contagious once I was on the treatment. The treatment was difficult in the beginning as all I seemed to do is sleep every three to four hours. As the months went along my coughing had stopped and my body was getting use to the medication.

“My main symptoms were fatigue, hair loss and skin problems. One thing the doctors warned me about was that I would lose weight during my treatment but to their surprise I was actually was putting on weight every time I had a check up. I came to realise that during my treatment I was counting down the days until it would all be over, but the support from my friends and family had helped me to get through this. I had come to realise that some things I might have taken for granted in life were more difficult during this period. Something as little as if I had planned to go out for dinner in the evening, I had to make sure I hadn’t planned anything the next day so I could rest. Before TB I was always out and about going for a run, swimming or cycling but I had to stop all of these activities. It was frustrating at times but I knew it would end soon.

“After I was given the all clear it was such a relief. I have a new perspective in life of making the most of life as you don’t know what obstacles will be thrown at you. I have learnt to be patient with my recovery. I know I won’t be back to my old life straight away. I have now been cleared for five months and I continue to be very careful with my health and make sure I take care of myself and most importantly my immune system. I am now looking forward to getting active again and travelling the world.

“From my experience I would say don’t be afraid of having TB. If it is diagnosed early you have a high curable rate. I came to realise as I shared my story that TB was more common than I had first thought. Positive attitude, healthy diet, strong will and good support will help you get through this. At the end you will see that it is a great achievement that you have got through this, be proud.”

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