Living with an invisible enemy

Most people assume TB was wiped out in Britain in the 1950s.

While it is a huge problem in many poverty stricken Third World countries, few would expect to meet a victim at the school gates in Hove. For 46- year-old single mum Seonai Gordon, however, it is a very different story.

Despite having a BCG vaccination like everyone else when she was 11, Seonai has been diagnosed with TB twice, leaving her breathless and coughing up blood every two minutes.

She has had horrendous side effects from the medication which she says has barely improved since the 1950s, and she has been ostracised by friends and colleagues who were afraid of catching it.

Now, fully cured and living in Hove, Seonai is hoping to raise awareness of the disease which is making a quiet comeback.

The infection that killed Keats and two of the Bronte sisters, is one of the world's most contagious diseases, affecting 9m people every year worldwide.

The number of cases in the UK is relatively low by comparison, but it is on the rise.

Figures have gone up by 20% in the last decade, with an increase of 80% in London. In some boroughs, rates are higher than in Eastern European countries. Singer Amy Winehouse was reportedly tested for TB recently and, as the growth of international travel helps spread the disease, cases are also on the rise in Brighton.

Contrary to headlines which suggest it is mainly immigrants and refugees who catch TB, around half the cases in Britain are British-born. While TB is all too often blamed on overcrowded housing, poor nutrition and poverty, Seonai's case proves otherwise.

Seonai's symptoms started in 1999 with a bad cough and shooting chest pain. When it still hadn't gone after three weeks, she went to the doctor and was diagnosed with TB. Highly contagious, she was forbidden from picking up her son at nursery, put in an isolation unit and not allowed any visitors for two weeks.

Although he was showing no symptoms, her son also tested positive and was put on medication for three months.

Seonai was working in Scotland as a journalist on the Glasgow Herald at the time, having just returned from Asia, where she'd been working on the Thailand Times. She doesn't know if she caught it in Thailand or in Glasgow where, ironically, doctors diagnosed a man with the first case of untreatable TB in Britain in 2005.

With the right medication, TB can be cured in nearly every case. Due to the extreme nature of the treatment, however, many sufferers fail to complete the dose. Seonai describes the side-effects as "horrific". She had to take 20 tablets a day which led to nausea and projectile vomiting, making her knees, hips and ankles swell up. The other bizarre, yet common side-effect was the change in colour of her skin and bodily secretions. "My pee, tears and even my contact lenses turned a dark shade of orange," she says. "To this day, my legs from the knee downwards are tainted orange."

Despite her ordeal, Seonai took the dose for nine months, eventually returning to work to find a sign up saying, "one of our journalists has got TB, if you're worried, get checked by the nurse".

"I was petrified someone was going to test positive and I had given it to one of my work colleagues," she says. Even the nursery where her little boy went wanted proof she wasn't contagious.

"I found myself constantly having to explain to people I wasn't infectious," she says.

In 1999 (still on medication), she moved to Brighton, before getting itchy feet and taking a job back in Thailand. As the editor of a glossy magazine, she had a well-paid job, plush apartment and glamorous lifestyle - dispelling the myth that TB is confined to those living "in cardboard boxes", as she points out. Then in July 2004, she developed a cough.

Thinking it was just a cold, she carried on working, but the cough persisted. She went to the doctor, several times, who blamed it on hayfever or an allergy. She was even prescribed steroids and anti-histamines, but the coughing got worse. Seonai got a sore throat and eventually lost her voice along with her appetite, unable to eat anything other than a boiled egg.

Her weight plummeted and she suffered night sweats so bad she would have to get up to change the bedding in the middle of the night.

This went on for a year and a half. "I can't remember a night when I didn't have them," she says. "I didn't know what was going on. No one had told me you could get TB twice."

By mid-2005, too weak to move, she'd had to quit her job and had transformed from strong and healthy to a virtual skeleton. She deteriorated further over the next few months until April 2006, when she collapsed.

Seonai was rushed by ambulance to hospital in Bangkok, where she was diagnosed with TB. This time, due to the delay, it had destroyed most of her lungs. Her son, then 11, tested positive again (despite showing no signs) and had to be treated.

Instead of being kept in isolation like in Britain, Seonai was put in a ward with dozens of other TB sufferers. The beds were so close she could touch the person next door. She stayed there for a week until she could find the money to pay for a private room. It was particularly distressing for her son, she recalls, who was frightened she was going to die.

After two months in hospital, also concerned she wouldn't pull through, friends there paid for her flight back to Britain.

She arrived, in a wheelchair, in June 2006. Still on medication, Seonai showed little improvement, coughing up profuse amounts of blood every day for eight months.

"I was told if I ever coughed up more than a tablespoonful I should call an ambulance immediately, because there was a risk of rupturing an artery," she says.

Over the next 12 months, she had little strength to do anything, and the breathlessness gave her panic attacks which stopped her going out.

Seonai was on medication (with equally horrendous side-effects) for two years in total. While she is no longer contagious, the TB has left her with only 50% lung function and coughing bouts that last up to an hour each morning (she has been told she will have this for life).

"It has destroyed three quarters of my lungs, more or less, which makes it hard to tie my shoe laces, never mind go for a walk," she says.

She relies on a mobility scooter to get around and has to have help with housework, shopping and getting in and out of her first-floor flat.

Having been admitted to hospital twice with pneumonia, Seonai is prone to chest infections and when people are coughing around her on a bus or in a shop, she covers her mouth with a tissue. She says she is not so much scared for herself, but for her son, now 13. "I am petrified of it coming back," she says.

"I am frightened I won't have as long a life as some people. I am a mum first and foremost and I want to see my son grow up."

Since getting involved as a volunteer for the Federation for Disabled People in Brighton, she feels she has turned a corner. Working with other disabled people has not only helped her come to terms with TB but inspired her to carry on. Above all, it has given her her dignity back.

"Once you've stared death in the face, you're not so frightened by it,"

she says. "You realise it's what you can do, not what you can't."

According to Seonai, the stigma of having TB is worse than HIV, which she claims is much more widely accepted.

"I actually had friends in Brighton refusing to have me around for dinner," she observes.

Health professionals say TB cannot be caught by sitting next to someone who is coughing on a bus.

Nor is it spread by dishes or drinking glasses. People only tend to get it if they've been in close daily contact with someone who has the disease such as a family member, friend, partner or co-worker.

"People always ask me where I got it which just makes me mad," says Seonai. "You don't go around remembering where you were the last time you stood next to someone who coughed."

Brighton and Hove currently has the highest number of TB cases in Sussex and has seen a stark increase in the last five years. There were 50 cases in 2007; most sufferers tend to be young adults aged 15-44. TB specialist Cheryl Giles believes it is largely to do with the city's transient population, universities, HIV community and high migrant population.

"Obviously if someone has TB, they pose a risk," she says. "There is a concern as with any infectious disease and I think there are probably a lot more cases we don't know about in areas that are hard to reach."

While levels are comparatively low compared with London, Cheryl advises the public to not only be aware of the symptoms but the facts. "There is a huge stigma and a huge misunderstanding surrounding TB," she says.

"People become very frightened and panicky, and while that perception was right in the 1940s, considering the healthcare we have today, it is no longer realistic. We all need to be aware but coming into contact with someone on the South Coast who has TB is still relatively low."