How one of the world’s rarest diseases left Sky’s Deborah Haynes critically ill

Published

1 month ago

September 24, 2025

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Paddling in a bay on the tiny Channel Island of Sark, I suddenly felt very sick and cold.

Less than 48 hours later, I was being emergency evacuated to the intensive care unit of a London hospital via cart, tractor, lifeboat, private jet and ambulance.

Ultimately, an incredible team of doctors, nurses, and volunteers saved my life – for a second time, though falling ill with one of the rarest diseases in the world while in one of the remotest corners of the British Isles was an unfortunate first.

I have something called atypical Haemolytic Uremic Syndrome (aHUS) that – when triggered – affects my immune system, destroying blood cells and harming other vital bodily functions.

Classed as “ultra-rare”, there is only around one new incident of aHUS per two million people every year. And an attack can be fatal, so the speed of diagnosis is key.

In my case, I already knew about the condition as I first fell ill with it eight years ago.

When it happened a second time, the heroic efforts of Sark’s only doctor, a group of volunteer rescuers and the medics at University College Hospital (UCH) meant I was raced from the middle of the English Channel to an intensive care bed in just over 11 hours – enabling rapid and effective treatment.

Now back home and expected to make a full recovery, I thought I would share my experience to help raise awareness about this little-known disease as today is aHUS Awareness Day.

‘I was feeling increasingly wretched’

My husband and I had planned to spend a few days in August on Sark – a beautiful island in between the UK and France that is a designated “dark sky” area because of an absence of light pollution.

There are no public streetlights on the territory.

More relevant to this story, cars and regular ambulances are also banned.

Instead of driving, Sark’s just over 500 residents and ferry-loads of tourists either walk, cycle or sit on the back of carts towed by horses – and on occasion tractors – to visit beaches, coves and other attractions.

I started to feel queasy on the ferry that took us to Sark.

We initially thought it was seasickness.

But the nausea lingered as we walked from the port to our hotel to dump our bags.

Thinking a swim might make me feel better, we trekked down a steep path to the beach and ventured into the sea, which is when my body decided to break.

I came out of the water, shivering uncontrollably and thought I was going to faint. After getting myself dry, we tried to return to the hotel, but I started vomiting violently on the side of the path – much to the disgust of a family that was trying to overtake us.

Once back at the hotel, I collapsed into bed, only leaving it to be sick.

We speculated that it must be food poisoning and hoped it would pass within a day.

But 24 hours later, while I had stopped vomiting, I was feeling increasingly wretched and beginning to wonder whether it could be aHUS again.

‘The onslaught is like an invisible storm’

The only other time I have been struck down by the disease was in January 2017, while working as the defence editor at The Times.

On that occasion, I took myself to my local hospital in Kent to be told that I had acute kidney failure and my bloods were “deranged”.

Fortunately, the haematologist on duty had been aware of aHUS – then a new acronym for me – and had me rushed to University College Hospital in London, which has a specialist team that can treat the condition led by Professor Marie Scully, a world-renowned expert.

I soon learnt that aHUS is caused by part of my immune system – called the complement system – becoming overactive and attacking my body rather than targeting bugs.

This “friendly fire” – likely linked to a genetic glitch that, in my case, had thankfully lain dormant for the first 40 years of my life – can be activated by infection, pregnancy or food poisoning, though sometimes the cause is unknown.

The subsequent onslaught is like an invisible storm that destroys a patient from the inside, shattering red blood cells, damaging small blood vessels and causing tiny clots.

The clots clog up kidneys and trigger acute renal failure.

If left untreated, other organs can also collapse, while the risk of a stroke or heart attack rises.

Without intervention, the prognosis is dire.

Between 10 to 15% of patients die during the initial illness, while up to 70% of patients develop end-stage renal failure, requiring a lifetime of dialysis.

Since 2013, however, patients in the UK have had access to a drug called eculizumab, which effectively turns off the malfunctioning part of the immune system. It is expensive – at many thousands of pounds a shot – but it saves lives, including mine.

‘My protein levels were off the scale’

Lying in bed in Sark more than eight years on from the first episode, I did not want to believe my body had turned on itself again.

But after a little over 36 hours, with no improvement, my husband decided to get help.

His action likely saved me from even graver kidney damage or worse.

He set out to find Sark’s only GP, Dr Bruce Jenkins.

Blood tests are the best way to diagnose aHUS, but they were not an option on the island.

Instead, Dr Jenkins did a urine test, which is a good alternative.

Any trace of blood or protein in the urine is a sign that a person’s kidneys are in trouble.

My protein levels were off the scale of the test.

Upon seeing the result, Dr Jenkins instructed my husband to go back to our hotel and pack our bags – I was still floundering in bed – while he coordinated an emergency evacuation.

On Sark, given the lack of vehicles, this meant mobilising an ambulance cart towed by a tractor, which is operated by a team of Community First Responders – all volunteers.

The GP also contacted the main hospital on Guernsey, a larger Channel Island, which provides a marine ambulance service to rescue anyone with a medical emergency on Sark.

While all this was happening, I called an emergency number for the aHUS medics at University College Hospital to warn them I was likely suffering a relapse.

By chance, Professor Scully was on duty that day – a Friday – and over the weekend. She and her team sprang into action, contacting Sark and Guernsey to help.

Speed was key as my condition was worsening.

‘I asked a doctor if I was going to die’

Within minutes of the alert going out from Dr Jenkins, a tractor, pulling a white ambulance cart, arrived at our hotel, and the first responders guided me and my husband onboard.

They took us to the port to wait for the “Flying Christine”, an ambulance boat carrying two paramedics and operated by St John’s Ambulance and Rescue Service.

That team transported us via sea to Guernsey hospital before we were transferred to a specialist medical plane to be flown to Luton airport.

The last leg was a more conventional ambulance drive to UCH, where critical care doctors, as well as Professor Scully and her colleagues, were poised to start the treatment.

This quick response by the NHS and a network of volunteers meant I was taken from my sickbed in Sark to life-saving treatment in London in barely 11 hours.

By this point, the aHUS attack had caused my haemoglobin and platelet levels to drop, and my kidneys were failing.

The main treatment was the eculizumab drug – administered intravenously – but I also needed blood transfusions and to be put on a machine that acts as a form of dialysis.

The relief of being in the best possible place for my condition was immense, but the next few days were still frightening as my body took time to respond.

At one point, I asked a doctor if I was going to die – she assured me I was not.

On another occasion, pumped full of medication, hooked up to various machines and drifting in and out of sleep, I dreamt I was under missile fire – an occupational hazard of being a journalist who covers war – and tried to leap out of bed to an imaginary shelter, prompting the nurse who was looking after me to spring into action and make sure I stayed put.

Gradually, though, the treatment started to work.

After nearly a fortnight in hospital, including one week in intensive care, I was well enough to be discharged.

Today, I am on the mend and incredibly grateful to everyone who helped to save me from myself.

Deborah Haynes and Professor Marie Scully will be on Sky News from 8.30am to speak about aHUS Awareness Day.

What is aHUS?

Atypical haemolytic uraemic syndrome is an ultra-rare disease that affects between 2.7 and 5.5 people per million population worldwide. It has an incidence rate of about 0.4 cases per million people a year and can occur at any age.

The disease affects part of the immune system called the complement system. It starts to destroy the body’s own cells, especially those that line blood vessels. This leads to clots forming within small vessels. The kidney is most commonly impacted, but all organs can be harmed.

AHUS is typically linked to a genetic fault in the complement system or a group of proteins meant to regulate it.

The trigger for an attack can be infection, pregnancy or food poisoning.

Symptoms can include feeling unwell or tired, becoming confused, blurred vision, shortness of breath, high blood pressure, nausea and vomiting, diarrhoea and abdominal pain.

UK

Man charged with 11 counts of attempted murder over mass train stabbing and another attack at station hours earlier

Published

11 hours ago

November 3, 2025

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Man charged with 11 counts of attempted murder over mass train stabbing and another attack at station hours earlier

A 32-year-old man has been charged with 10 counts of attempted murder after a mass stabbing on a high-speed train.

Anthony Williams, 32, from Peterborough, was arrested on Saturday evening following an attack on the Doncaster to London King’s Cross LNER service.

He has been charged with 10 counts of attempted murder, one count of actual bodily harm and one count of possession of a bladed article following a knife attack on a train in Cambridgeshire on Saturday, British Transport Police (BTP) said.

BTP said he has also been charged with another count of attempted murder and possession of a bladed article in connection with an incident on a London train in the early hours of 1 November.

Police said a victim suffered facial injuries after being attacked at 12.46am with a knife on a train at Pontoon Dock station on the Docklands Light Railway (DLR) in east London.

In a statement to Sky News, BTP said the suspect had left the location before police arrived and officers subsequently identified Williams as a suspect.

Williams will appear at Peterborough Magistrates on Monday morning, police said.

Armed police were deployed to Huntingdon, Cambridgeshire, where the train was stopped and made the arrest within eight minutes of the first 999 call.

Footage of the arrest has emerged, showing a man on the ground surrounded by officers and a barking police dog, with the sound of a Taser being deployed.

Another man, 35, from London, who was also detained, was later released after officers established he was not involved.

On Monday, Transport Secretary Heidi Alexander told Sky News that one man, originally suffering life-threatening injuries, was now in a critical but stable condition in hospital.

She told Mornings with Ridge and Frost programme: “He went in to do his job, and he left work a hero. And there are people who are alive today because of his actions and his bravery.”

On Sunday, British Transport Police (BTP) confirmed he was a member of LNER rail staff who tried to stop the attacker.

“Having viewed the CCTV from the train, the actions of the member of rail staff were nothing short of heroic and undoubtedly saved people’s lives,” said BTP Deputy Chief Constable (DCC) Stuart Cundy.

The train driver, named as Andrew Johnson, has also been hailed as “courageous” for his actions during the stabbings.

Following the announcement about the charges on Monday, DCC Cundy warned against anyone interfering with their ongoing investigation.

“Our investigation is also looking at other possible linked offences. Following the charges authorised by the Crown Prosecution Service (CPS) I would stress the importance of not saying or publishing anything which might jeopardise or prejudice ongoing criminal proceedings, or the integrity of the investigation.”

Ms Alexander also told Sky News that BTP would be “increasing the visible patrols at stations” over the next few days.

“But generally, our trains are some of the most safest forms of public transport anywhere in the world,” she added.

Tracy Easton, chief crown prosecutor for CPS Direct, said: “Our team of out-of-hours prosecutors worked to establish that there is sufficient evidence to bring the case to trial and it is in the public interest to pursue criminal proceedings.

“We worked closely with British Transport Police to review a huge volume of evidence including CCTV. The number of charges will be kept under review as this continues to progress.

“We know the devastating impact the events on Saturday’s train has had and how the incident shocked the entire country. Our thoughts remain with all those affected.”

UK

Pregnant British teenager held on drugs charges freed from Georgian jail

Published

12 hours ago

November 3, 2025

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Pregnant British teenager held on drugs charges freed from Georgian jail

A pregnant British teenager has been released from jail in Georgia after being held on drug smuggling charges.

Bella May Culley, 19, of Billingham, County Durham, was arrested in May at Tbilisi Airport and accused of attempting to smuggle 12kg of marijuana and 2kg of hashish into the country.

She was found guilty by a Georgian court on Monday and sentenced to five months and 25 days in prison, the total time she had already spent in custody. Her family also paid a 500,000 lari (about £138,000) as part of a plea deal aimed at reducing her sentence.

Culley and her mother, Lyanne Kennedy, both cried as the verdict was read.

Wearing a cream blazer, the teenager looked overwhelmed as she was released from custody on Monday.

Asked how she felt, she said she was “happy” and told reporters she did not expect to be freed.

Culley’s mother held her daughter’s hand as she was released.

Georgian prosecutors were considering a two-year sentence, but “decided to consider the time she has already served,” case prosecutor Vakhtang Tsalughelashvili told The Associated Press.

Culley’s lawyer, Malkhaz Salakhaia, said she would be given her passport and would be free to leave the country on Monday.

The teenager pleaded not guilty to the charges after her arrest, saying she was tortured in Thailand and forced to carry the drugs.

Culley initially pleaded not guilty at a hearing in July to possession and trafficking illegal drugs.

She initially faced a maximum penalty of up to 15 years or life imprisonment, but was in talks with prosecutors about a potential plea bargain.

In Georgia, a nation of 3.7 million in the South Caucasus, the law allows for financial plea agreements that can be reached to reduce or eliminate a prison sentence in certain cases.

Such plea agreements are often obtained in drug-related cases.

Culley was reported missing in Thailand before her arrest at Tbilisi Airport on May 10.

UK

Sole survivor of Air India crash tells Sky News the trauma ‘broke’ him

Published

17 hours ago

November 3, 2025

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Only survivor of Air India Flight 171 crash tells Sky News the trauma 'broke' him

The sole survivor of the Air India crash that killed 241 people on board has told Sky News he has been “broke down” by the trauma.

Air India Flight 171 crashed into a building just after take-off in Ahmedabad, Gujarat, on 12 June, with Briton Viswashkumar Ramesh the only passenger who walked away from the wreckage.

In an interview with Sophy Ridge on the new Mornings with Ridge and Frost programme, Mr Ramesh faltered, stumbled and regularly lapsed into long silence as he tried to recall the day.

Warning: This article contains details some may find distressing

Mr Ramesh, 40, was in the now-fabled seat 11a, which was located next to an emergency door that he managed to climb out of after the Boeing 787 Dreamliner crashed.

His younger brother, Ajaykumar, seated in a different row on the plane, could not escape.

Months on, Mr Ramesh wanted to share the impact of that day in an attempt to try to regain control of his life – and to pressure Air India into addressing the catastrophic effect of the crash on him and his family.

But it is clearly traumatic to talk about.

“It’s very painful talking about the plane,” he says softly.

Asked by Ridge if he can speak about what happened on board, he falls silent.

Just after the crash, from his hospital bed, Mr Ramesh told cable news channel DD India “there were bodies all around me” when he stood up after the crash. A further 19 people had been killed on the ground.

In hospital, he was still pleading for help in finding his brother.

“How is your life now?” Ridge asks.

He says the crash has left him feeling “very broke down”, adding it’s much the same for the rest of his family.

He does not leave the house, he says, instead sitting alone in his bedroom, doing “nothing”.

“I just think about my brother,” he adds. “For me, he was everything.”

He says he still cannot believe Ajaykumar is dead – but that’s as much as he can bring himself to say about him.

Ridge acknowledges the contrast between Mr Ramesh’s own survival – “a miracle” – and the “nightmare” of losing his brother.

It echoes the sentiment of Mr Ramesh’s other brother, Nayankumar, who told Sky News in June: “I’ve got no words to describe it. It’s a miracle that he [Viswashkumar] survived – but what about the other miracle for my other brother?”

Mr Ramesh says he is still suffering physical discomfort too, dealing with knee, shoulder and back pain, along with burns to his left arm. His wife, he says, has to help him shower.

He and his wife live in Leicester with their four-year-old son, Divang.

“I have a four-year-old, so I know what four-year-olds are like,” Ridge says. “They’re a handful but they can bring a lot joy as well. How has he been since the tragedy happened?”

Mr Ramesh says Divang is “okay” but, with his eyes lowered, adds: “I’m not talking properly with my son.”

“Does he come to your room?” Ridge asks.

He shakes his head.

Mr Ramesh was joined by Leicester community leader Sanjiv Patel and his adviser and spokesperson Radd Seiger for support as he spoke to Ridge.

“Sophy… this is an important question that you’re asking,” says Mr Seiger.

“You’re a parent, I’m a parent, and we all know that being a parent is a privilege, isn’t it? But it takes a lot of energy… you need to be in a good place to be a good parent, to have that from the moment they wake up to the moment they go to bed.

“You need to be in a good place and we can all see… he’s [Mr Ramesh] been robbed of that and I think it’s just a chore for him to just get through the day, let alone be a husband, be a father.”

What’s next for the crash’s sole survivor?

Mr Seiger and Mr Patel say the list of what he needs to get his life back on track is “endless” but that it starts with “practical things” such as financial support.

Mr Ramesh and Ajaykumar used “all their savings” to set up a fishing business in India, which saw them frequently flying there together from the UK.

The business has stopped running since the crash, meaning Mr Ramesh’s extended family in both the UK and India has no income, according to Mr Patel.

For them, it amounts to an “existential threat”, he adds.

They say Air India has offered Mr Ramesh a flat interim payment of £21,500 – a one-off sum given to a claimant in advance of reaching the end of a personal injury claim.

A spokesperson for Tata Group, Air India’s parent company, told Sky News that Mr Ramesh had accepted the payment and that it had been transferred to him.

But Mr Seiger says the sum “doesn’t even touch the sides” when it comes to everything Mr Ramesh needs while he is unable to work or leave his home – from help with transporting his son to school, to food, to medical and psychiatric support.

They are petitioning for more than just cash payments, which they suggest reduces Mr Ramesh to “a number on a spreadsheet”.

Rather, they want Air India’s chief executive Campbell Wilson to meet with him, his family and the families of other victims in the crash, to hear about their struggles and “talk as humans”.

Mr Patel said: “Meet the people. Understand what they’re going through. Relying on bureaucratic machinery to deal with real lives [of people] who are going through real trauma – the pain of that, the financial consequences – that is the day-to-day – how lives have been destroyed, and not just the immediate family, but extended families too.”

A spokesperson for Air India told Sky News: “We are deeply conscious of our responsibility to provide Mr Ramesh with support through what must have been an unimaginable period. Care for him – and indeed all families affected by the tragedy – remains our absolute priority.

“Senior leaders from across Tata Group continue to visit families to express their deepest condolences. An offer has been made to Mr Ramesh’s representatives to arrange such a meeting, we will continue to reach out and we very much hope to receive a positive response.

“We are keenly aware this continues to be an incredibly difficult time for all affected and continue to offer the support, compassion, and care we can in the circumstances.”

Mr Patel also claims the UK government took away Mr Ramesh’s family’s Universal Credit after they went to India following the disaster.

According to the government’s website, those receiving Universal Credit can continue to do so if they go abroad for one month. This can be extended to two months if “a close relative dies while you’re abroad and it would not be reasonable for you to come back to the UK”, it states.

They are calling on Prime Minister Keir Starmer to look into the family’s circumstances and pressure Air India into doing more to help.

Mr Patel appeals to him, saying: “Take action today. If this was your family, what would you do? And if you understand that, you’ll know what to do.”

He suggests the UK government can also be doing more directly to help families in Britain who have been “devastated” by the crash.

“So while we wait for Air India to do what’s right, there’s what the UK authorities and the system can do as being right to serve the citizens in support during this tragic time,” he adds.

The Department for Work and Pensions told Sky News: “Our thoughts remain with the loved ones affected by this devastating tragedy.

“Our policy ensures people travelling abroad due to a bereavement can continue receiving Universal Credit for up to two months, rather than the standard one-month limit. Those who are abroad for longer periods would not be able to continue receiving the benefit.

“People can make a new claim once they return to the UK. This approach strikes a balance between our commitment to ensuring people get the support they need and our duty to the taxpayer.”

:: Watch Mornings with Ridge and Frost on weekdays Monday to Thursday, from 7am to 10am on Sky News