Blood disorder that makes it agony for Love Island’s Rosie Williams to bump her knee

Afflicted: Rosie, 27, has beta thalassaemia minor which means her oxygen-carrying red blood cells are smaller and fewer than usual

Glamorous Rosie Williams, the lawyer who found fame this summer on the TV show Love Island, may appear to radiate good health — but she often experiences such crushing tiredness that she’s too exhausted even to raise an arm.

It’s not her hectic schedule that’s to blame — since appearing on the show Rosie’s been busy with personal appearances — it’s a genetic blood disorder. 

Rosie, 27, has beta thalassaemia minor, which means her oxygen-carrying red blood cells are smaller and fewer than usual, making it harder for her body to get the oxygen it needs, which can leave her feeling tired and weak.

‘It’s the kind of tiredness where you can’t function, you’re too tired to talk or to eat and it makes me very sensitive to pain,’ says Rosie. ‘If I trap my finger in a door or hit my knee, the pain can make me feel faint.’

She’s also prone to dizziness. ‘I can feel when I’m going to pass out,’ she says. 

‘The other day, I knew I was about to collapse. I just lay on the floor in the bathroom, fainted, got back up again and went to bed to rest. I barely take any notice now I’m so used to it.’

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Before joining ITV2’s Love Island based in Mallorca this year, Rosie, who is single, and originally from Glamorgan, worked as a solicitor in Manchester. 

‘A couple of times I collapsed at work, hit my head and had to be rushed to hospital by ambulance, but luckily suffered no concussion,’ she says.

‘There is one positive side-effect: I never get bitten by mosquitoes, they don’t like our blood.’

Beta thalassaemia is a genetic condition that affects more than 200,000 people in England, mainly those from the Mediterranean, the Middle East, South and South-East Asia. It arises from a mutation of the HBB gene that helps with the production of a protein that is a key component of haemoglobin, — needed to form red blood cells that transport oxygen round the body.

Fact: Beta thalassaemia is a genetic condition that affects more than 200,000 people in England, mainly those from the Mediterranean, the Middle East, South and South-East Asia

The mutation means haemoglobin is produced in smaller quantities. The main symptoms are tiredness, shortness of breath, pale skin and dizziness.

Any deficiency of haemoglobin is referred to as anaemia — but thalassaemia anaemia differs from iron deficiency anaemia. The two are often confused as both lead to a lack of circulating oxygen and cause almost identical symptoms, says Dr Khaled El-Ghariani, a consultant haematologist based at Royal Hallamshire Sheffield Teaching Hospital.

‘Iron deficiency anaemia is caused by a lack of iron and haemoglobin,’ he says.

‘In thalassaemia anaemia, the red blood cells are smaller than in iron deficiency anaemia and a lack of iron isn’t the issue — but it often requires a haematologist to diagnose it. Iron is commonly prescribed to patients presenting with these symptoms,’ he adds.

‘However, prescribing iron to patients with beta thalassaemia can be dangerous because the iron can build up to toxic levels, as patients’ bodies don’t break it down normally.’

Rosie’s brother Jacob, 22, who also has the condition, was mistakenly prescribed iron at the age of four. He’d been diagnosed with beta thalassaemia at two, but when he was taken to the GP after seeming tired and looking pale, he was prescribed liquid iron.

The skin and the whites of his eyes became yellow with jaundice and when he was seen by a paediatrician six months later, he was taken off the treatment. Fortunately no harm was done.

Rosie, Jacob and sister Evie, 25, all have the condition. They inherited the gene responsible from their father, Stephen, 50, a strategic investment analyst.

He discovered he had the beta thalassaemia trait at the age of 16, after developing increasingly blurred vision, which can be a side-effect of the disorder. He was given a haemoglobin electrophoresis test, a blood test able to pinpoint the small haemoglobin cells that are a sign of thalassaemia.

There are various forms of beta thalassaemia: beta thalassaemia major means that rather than having reduced levels of haemoglobin leading to smaller red blood cells, the patient has no haemoglobin at all.

It’s life-limiting and the only way the body can get the oxygen and iron it needs is through regular blood transfusions. The other option is a bone marrow transplant.

If their mother had carried the faulty gene as well as their father, Rosie and her siblings would have had a 50 per cent chance of developing beta thalassaemia major.

And as Rosie acknowledges: ‘I’m so lucky not to have it — my life would have been so different.’

Rosie was diagnosed with beta thalassemia minor aged 18 months after showing signs of lethargy.

‘The day we went to the hospital to pick up the results, the consultant pathologist said that Rosie must be Stephen Williams’s daughter, such was the rarity of thalassaemia in the Rhondda Valley,’ says Rosie’s mother Sharon, 48, a headteacher.

Evie was diagnosed at roughly the same age as Rosie, and both showed signs of tiredness and had extremely pale skin. ‘All my children missed school because of it,’ adds Sharon.

Rosie recalls often feeling exhausted as a teenager. ‘I tried to lead a normal life. I danced from the age of five and was a cheerleader. But I often had to ask Mum to pick me up from friends’ houses or school because I’d fainted or was feeling unwell.’

For those with beta thalassaemia minor, rest is the only prescription. ‘Blood transfusions for beta thalassaemia minor sufferers are unnecessary as they do produce haemoglobin, but just less of it,’ says Dr El-Ghariani.

‘Normal levels are about 12-16g per litre while beta thalassaemia minor sufferers may have about 11-12g per litre. As long as they look after themselves, minor sufferers can live normal lives.’

Rosie and her siblings have a 50 per cent chance of passing beta thalassaemia minor on to their children, and Evie’s two-year-old daughter, Myla, was diagnosed with it as a baby.

‘By the time Myla was one, I would have put money on the fact that she would test positive,’ adds Sharon. ‘She was getting 12 hours sleep a night and a two-hour nap and was still extremely tired, grumpy and very pale.’

Rosie’s choice of partner will be crucial to her own children’s chances of developing the condition. ‘If I have a child with a man who also has beta thalassaemia minor, there is a 25 per cent chance our children will develop serious beta thalassaemia major.

‘It wouldn’t stop me dating someone with the condition but I’m not sure what kind of decisions I would make until I was faced with the situation,’ she says.

Rosie, who carries a card explaining her condition but can’t donate stem cells or give blood as a result, is supporting a fund-raising drive run by the charity DKMS, which supports people with thalassaemia as well as blood cancer.

The campaign, Let’s Nail Blood Cancer, encourages people to host manicure parties to raise money for stem cell donor registration.

Rosie says: ‘I’m lucky I don’t suffer with the major condition, but I may have a child with it in the future, and if I did, I’d sleep easier knowing there was a donor who could help.’

dkms.org.uk/letsnailbloodcancer