Anisa had no idea she was living with a condition dubbed the ‘widow-maker’… until she suffered a massive heart attack at just 31. This is the little-known inherited risk factor she – and millions of others – carry unknowingly

When Anisa Kelley first experienced chest pain that spread into her shoulders and neck, she didn’t think much of it. After all, she was just 31, exercised regularly and could easily clock up 20,000 steps a day working as a flight attendant.

But the pain kept returning, sometimes several times a day, and she began to worry something was seriously wrong.

‘It started as tightness in my chest that would radiate into my shoulder, up my neck and into my jaw,’ recalls Anisa, now 37.

‘I found myself constantly rolling my left shoulder and stretching out my neck. It felt like it was tight for some reason, but I just couldn’t find that release. At its most intense, I couldn’t see straight. I would come over hot and light-headed and it felt like my clothes were contracting around me. I remember thinking I’m too young for something like this.’

It was the start of a three-year ordeal involving countless visits to doctors and emergency departments, only for her concerns to be dismissed. But as the pain worsened, Anisa became convinced something was seriously wrong.

Finally, aged 34, she was given a devastating diagnosis. Six of the arteries supplying her heart were severely narrowed or blocked, three of them completely. She was suffering from severe angina – agonising chest pain caused by restricted blood flow to the heart.

Worse still, tests suggested she had recently suffered a heart attack without even realising it. So she underwent a procedure to fit five stents – tiny metal mesh tubes implanted into blocked arteries to restore blood flow to her heart.

And the likely culprit was something neither she nor her doctors had considered: a little-known inherited risk factor that millions of people carry unknowingly, and which, at high levels, can double their risk of cardiovascular disease. It is called lipoprotein(a), or Lp(a) – a type of cholesterol-carrying particle in the blood that can cause fatty deposits to build up in arteries, increasing the risk of heart attacks and strokes.

One in five people has elevated levels. Yet it causes no symptoms, is not detected by standard cholesterol tests and can be high even in otherwise healthy, active people.

Now leading heart specialists are calling for every adult to have a simple blood test to check their levels, potentially as early as 18.

And while there is no approved treatment proven to prevent heart attacks by lowering Lp(a), doctors say discovering you have high levels could be lifesaving – by offering a chance to tackle other risks before serious damage is done.

For Anisa, discovering the cause of her chest pain had been a long and frustrating battle. Despite repeatedly seeking medical help, she was told tests showed nothing seriously wrong with her heart. Her cholesterol was normal and her high blood pressure was initially attributed to ‘white coat syndrome’ – when readings taken during a medical consultation are high due to nerves. Even when she was referred to a cardiologist in 2021 a battery of investigations failed to reveal the problem.

She was given medicine to lower her blood pressure, which initially seemed to ease her chest pain.

But a year later, the attacks returned with a vengeance. Anisa began experiencing stabbing pains several times a day and struggled to walk more than 20 yards.

‘I was struggling at work too and my life as I knew it was rapidly falling apart,’ she says. ‘One night, I was woken up by the pain. That was the turning point. Enough was enough. My heart was clearly struggling even as I was resting.’

Anisa, from Atlanta, Georgia, in the US, packed a bag and headed to casualty, expecting to be admitted for several days. But again, doctors could find nothing wrong and she was sent home. She says: ‘No one was really hearing me. I knew something was wrong. I had this gut feeling it was my heart.’

Two days later, a cardiologist covering for her usual doctor reviewed her case and arranged further investigations. Within a fortnight, she underwent an angiogram – in which dye is injected into blood vessels to reveal any narrowing or blockages. Doctors had planned to investigate whether spasms in her arteries might explain the pain.

But almost as soon as the dye was injected, the atmosphere in the room changed. She says: ‘The conversation in the room got quieter and quieter. Students started pointing at the screens and suddenly the room was silent.’

The investigation revealed the devastating extent of the disease in her coronary arteries. Further blood tests would eventually uncover another crucial clue: Anisa had dangerously elevated levels of Lp(a). Her reading was 150 – well over the 125 threshold at which doctors consider the risk of heart disease to be increased.

This means someone can be young, fit and apparently healthy while carrying a heightened risk of heart disease from birth. And because Lp(a) is not included in routine cholesterol tests, that risk can remain hidden for decades.

Research increasingly suggests elevated Lp(a) is a major – and often overlooked – risk factor for heart attacks and strokes.

This year, an analysis of studies involving 20,000 adults found those with levels over 175 were two-thirds more likely to suffer a stroke and faced a 50 per cent higher risk of dying from heart disease over four years.

Unlike many other cardiovascular risk factors, such as high blood pressure or raised ‘bad’ cholesterol, Lp(a) is largely determined by genetics, rather than lifestyle.

And because levels tend to remain relatively stable throughout life, the damage of fatty deposits building up inside arteries can grow silently for decades – sometimes leading to heart attacks and strokes at an unusually young age.

Despite this, very few people know their Lp(a) level. An estimated two per cent of people in Britain have been checked. And experts argue this must change.

Dr Nishant Shah, a cardiologist at Duke University Hospital in North Carolina, argues everyone should be tested, saying: ‘The minute someone hits adulthood, if not sooner, they should be tested for Lp(a). Current guidelines recommend all adults be tested at least once in their lifetime. Adult definition is 18 years old. If you haven’t been tested already, you should.’

The European Society of Cardiology recommends that adults have their Lp(a) measured at least once in their lifetime.

But in Britain, testing is not routinely offered, and is generally reserved for patients with a strong family history of early heart disease or other warning signs.

Dr Shah argues that waiting until someone develops symptoms or suffers a heart attack risks missing the opportunity to prevent serious damage in the first place.

But there is a problem with the push for widespread testing: unlike ordinary cholesterol, which can be lowered with lifestyle changes, statins and other treatments, there is no approved drug proven to prevent heart attacks or strokes by lowering Lp(a).

A specialised blood-filtering procedure can remove Lp(a) from the circulation but it is available only to a small number of patients with particularly severe heart disease.

And hopes of an imminent breakthrough suffered a setback last week, when researchers announced disappointing results from a big global trial. The Horizon study tested an experimental drug designed to dramatically reduce Lp(a), to see if doing so would prevent heart attacks, strokes and deaths from cardiovascular disease. Although the treatment successfully lowered Lp(a), it failed to significantly reduce the risk of these serious complications.

The findings have reignited a debate among doctors about the value of testing millions of otherwise healthy people for a risk factor they cannot directly treat.

But Dr Shah says: ‘I think there is value in knowing your numbers, and the notion that there’s little we can do is largely inaccurate. If someone has a very strong family history of heart disease, clinicians would never say, “there’s nothing I can do with that information”. It’s exactly the same principle.’

The key, he says, is to tackle the other factors that increase the risk of a heart attack or stroke – particularly high blood pressure and raised levels of ordinary cholesterol. Unlike Lp(a), these can be controlled through medication and lifestyle changes, including losing weight, exercising regularly, eating a healthier diet and stopping smoking.

‘If a patient’s Lp(a) is elevated, maybe that should be a sign to put them on cholesterol-lowering drugs such as statins to ensure their LDL cholesterol is as low as possible,’ Dr Shah says. ‘People may also be more inclined to change their lifestyle if they know they have a genetic predisposition to heart disease, heart attack or stroke. Often, that motivates them to work harder to lose excess weight and get on top of their blood pressure and more generally live a heart-healthy lifestyle.’

While this may not lower Lp(a), it can reduce other risks that might combine with it to cause a heart attack or stroke. Dr Shah says: ‘Modify what you can modify. That’s what I tell patients.’

And because high cholesterol and blood pressure often have no symptoms, he argues that identifying people at risk before they become ill is essential. He says: ‘Often people don’t feel the risk factors that lead to heart disease. They don’t feel the cholesterol or the elevated blood pressure until it’s too late and a complication happens.

‘We want to avoid that. It’s important to identify these risks early so we can determine who is most at risk and intervene before something catastrophic occurs.’

Unlike an ordinary cholesterol test, which measures several different types of fat in the blood, detecting Lp(a) requires a separate blood test. In Britain, it is not routinely offered by the NHS, although GPs and specialists can request one for patients considered to be at increased risk, especially those with a family history of early heart disease.

Private tests are also available, with at-home kits costing about £45 and clinics charging £65 to £130. And, unlike conventional cholesterol, Lp(a) levels remain relatively stable throughout life, meaning most people need only be tested once.

For Anisa, learning she had elevated Lp(a) finally provided an explanation for years of frightening symptoms. She now believes a simple blood test, carried out years earlier, might have changed the course of her life. Thanks to her stents, she is now pain-free and undergoes regular medical monitoring.

‘If you have that one piece of information, which can be identified with a simple blood test, it can completely change your risk category and potentially your life,’ she says.

‘Everyone should have access to this information and the opportunity to get tested.’

She also hopes her experience will encourage doctors to take patients seriously when they repeatedly seek help for symptoms, adding: ‘If someone keeps coming back with the same problem, somebody has to take ownership and take the next step rather than passing the baton to another doctor.’