Kennedy’s disease: Doctors took over 20 years to diagnose navy captain’s ‘nasty’ illness

Kim, now 66, has been living with Kennedy’s disease since his late 30s. Also known as spinal bulbar muscular atrophy, it is thought just one in every 40,000 people worldwide are diagnosed. Although it brings with it a raft of debilitating symptoms such as muscle weakness, it is often missed or mistaken for other conditions such as motor neurone disease.

Speaking exclusively with Express.co.uk, Kim – who has since retired from the navy – shared his story.

“I had my first symptoms in my late 30s – I was a Royal Navy frigate captain at that time and I found that I couldn’t do the flight deck exercise routines that a captain usually had to do because I was getting quite a lot of muscle weakness and cramping,” he said.

“I saw a lot of doctors and I kept on being told I had some sort of idiopathic illness, which I think is their way of saying, ‘I don’t quite know what you’ve got.

“By the time I was diagnosed at 62 I was struggling to walk any distance and was starting to use sticks to help me walk.

“I had a lot of neuropathy, so I got completely numb feet and hands – that’s what first took me to a specialist in London, which eventually led to a diagnosis.”

Upon his diagnosis Kim, who now works in the house building industry, said he felt a “degree of relief” after finally knowing what was wrong.

However, he added: “I think there was one very significant concern when I got the diagnosis because I looked up Kennedy’s disease and found out it was inherited and I found out both my daughters were going to be carriers – that was quite alarming.

”In most cases only men develop symptoms of the disease, while women are just carriers.

The most common early symptoms – that usually appear between the age of 30 and 50 – are:

Other symptoms that usually appear later are problems with swallowing and speech, and impotence.

Kim said: “My symptoms are getting significantly worse, I notice it month to month – It impacts on pretty much every aspect of daily life now.

“I can’t walk far these days, and when I do I use two walking sticks and I can be in meetings and my speech comes to a grinding halt.

“Another significant feature of Kennedy’s is fatigue so by the end of the day it really fatigues me – even just preparing a meal is too difficult.”

Unlike motor neurone disease, however, it is possible to definitively diagnose Kennedy’s disease with a blood test.

“I think it is often missed or misdiagnosed because of lack of awareness, that’s why it’s extremely important awareness is raised,” Kim explained.

“The University College of London recently had access to the genome database and discovered an awful lot more people are carrying this gene defect than they first thought.

“There are an awful lot of people out there with Kennedy’s disease who are being told they have an idiopathic neurone disease or in many cases being told they’ve got motor neurone disease.”

There is currently no cure for Kennedy’s disease, but physiotherapy is mainly used to treat some of the symptoms.

Kim is a trustee of Kennedy’s Disease UK – the only UK based charity for the disease, which last month completed an epic sponsored road trip in a vintage Citroen 2CV from Los Angeles to Rome in a bid to raise vital funds for research.

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  • 46 минут назад 09.08.2022Health Care
    How to live longer: Climbing nighttime temperatures may increase death rates by 60% – why?

    The factors that set centenarians apart from the masses are both genetic and environmental. But the effects of some environmental factors, such as temperature, remain poorly understood in terms of their effects on the ageing body. Now new evidence suggests a climb in nighttime temperatures could increase mortality rates by a staggering 60 percent by the end of the century. Here’s why.

    Findings published in the journal Nature Metabolism earlier this year found that body temperature exerted a greater effect on lifespan than the speed of energy spent.

    The discovery, made by researchers at the Shenzhen Institute of Advanced Technology of the Chinese Academy of Sciences, and Wenzhou University and the University of Aberdeen, appeared to suggest that body temperature may be a more important mediator of lifespan than metabolic rate.

    Mice and hamsters exposed to high temperatures in the study saw their metabolism fall and their body temperature increase.

    Professor John R Speakfrom, the co-corresponding author of the study, said: “We found that exposing the rodents to these conditions shortened their lifespans.

    “Lower metabolisms didn’t lengthen their lives, but higher temperatures shortened it.”

    The findings reinforce growing evidence that variations in temperature have profound effects on living organisms.

    What’s more, they cite new research warning there will be an increased risk of mortality as temperatures rise across the globe.

    The latest research, published in the journal Lancet Planetary Health, was co-authored by a group of researchers in China, South Korea, Japan, Germany and the US.

    One of the co-authors, Yuqiang Zhang, Ph.D, a climate scientist in the Department of Environmental Sciences and Engineering at the Gillings School, said: “The risks of increasing temperature at night were frequently neglected.

    “However, in our study, we found that the occurrence of hot night excess is projected to occur more rapidly than the daily mean temperature changes.

    “The frequency and mean intensity of hot nights would increase more than 30 percent and 60 percent by the 2100s, respectively, compared with less than 20 percent increase for the daily means temperature.”

    The threat to human health lies mainly in the fact that ambient heat during the night interrupts the normal physiology of sleep.

    The effects of reduced sleep quality and quantity can be damaging to the immune system, which in turn increases the risk of cardiovascular disease, chronic illnesses, inflammation and mental health conditions.

    Mr Zhang added: “To combat the health risk raised by the temperature increases from climate change, we should design efficient ways to help people adapt.

    “Locally, heat during the night should be taken into account when designing the future heatwave warning system, especially for vulnerable populations and low-income communities who may not be able to afford the additional expense of air conditioning.

  • 46 минут назад 09.08.2022Health Care
    Tony Blackburn: ‘The idea was that I’d die laughing’ Star recalls uncontrollable addiction

    Having begun his career DJing for offshore pirate radio stations such as Radio Caroline, Blackburn moved to BBC Radio 2, and then Radio 1, where he described that his job was “to entertain and tell corny jokes, not have opinions or talk politics”. With his extremely successful career, behind the scenes Blackburn’s marriage to his first wife, Tessa Wyatt, was falling apart and in 1972 they divorced.

    It was after the breakdown of his marriage to Wyatt that the star was first prescribed Valium, which he soon began taking more of than the recommended dose.

    Addressing his addiction when writing about it back in 2007, Blackburn shared: “Although I could be irritating at times, I never really thought that my wife was serious when she talked about leaving me.

    “Then came the inevitable day of reckoning: on a Friday in October 1976, Tessa at last convinced me that she meant it.

    “I was distraught. Opening myself a bottle of wine, I swallowed several Valium and sat down to watch Fawlty Towers.

    “I’m glad I had no idea that day of how long I’d have to wait for my heartbreak to heal. God knows what I might have done if I had.”

    From here Blackburn’s mental state and relationship with drugs deteriorated. He admitted that he “allowed [himself] to get hooked on prescription drugs” and had multiple one-night stands.

    “I lived alone, and for 17-and-a-half years – from the time of my divorce until well into the 90s – I survived on a daily diet of tinned lentil soup and processed peas (plus the occasional potato added as a treat),” Blackburn said, sharing details of his lowest point.

    “I was too busy floating through life dosed up on Valium to take much notice of anything. There are times in life when resentment can get the better of us, and I had run straight to the medicine cupboard for comfort. I soon discovered that antidepressants helped blot out the wilder emotional swings, enabling me to function without collapsing in a heap.”

    As his father was a doctor, Blackburn was able to get Valium prescribed more easily, without his father knowing how addicted he had become to prescription drugs, which soon went beyond Valium.

    It was a heart attack scare that finally led to the star curbing his addiction, deciding “no more drugs” and checking himself into a rehab centre.

    The Addiction Center explains that Valium is a drug known for its “calming properties” but is also “highly addictive” and commonly abused by individuals.

    The website warns that addiction to Valium can progress quickly if the drug is used in a way not directed by a doctor. Over time, it is harder for an individual’s brain to function normally without the drug.

    What is particularly dangerous is that some people addicted to Valium may not even realise they have a problem. Taking Valium for longer than four to six weeks, even with a prescription from a doctor, increases the likelihood of becoming addicted.

    One of the tell-tale symptoms of a Valium addiction is needing larger doses to feel the drug’s effects. Other signs of an addiction to Valium can include:

    It is important to note that once a user has a tolerance to Valium’s effects, they could also have withdrawal symptoms if they stop taking it. The symptoms of withdrawal are intense, and many people who are already addicted may not be able to quit on their own.

    In some cases an individual may overdose on Valium, leading to the following dangerous symptoms:

    For help, support and information on how to get treatment, contact Samaritans on 116 123 or via email at jo@samaritans.org.

  • 46 минут назад 09.08.2022Health Care
    UK hospitals need to be braced for what’s coming this winter – and it’s not Covid

    Publishing their data in The Lancet Regional Health journal, the researchers warn non-Covid viruses could cause an increased number of respiratory infections.

    Their conclusions were reached after analysis which found 55 percent of respiratory disease hospitalisations during the peak of the pandemic were caused by non-Covid related infections.

    The research was conducted and funded in part by vaccine developer Pfizer as part of a mission to compare various forms of respiratory infections and their causes in order to build-up a better picture of what could happen this winter.

    Data was taken from 135,014 hospital admissions from between August 2020 and November 2021. From this they ascertained Covid had accounted for just 26 percent of respiratory hospital admissions.

    This prediction by researchers is a reminder that COVID-19 is not the only respiratory threat to patients this winter. As temperatures fall and the cost-of-living costs bite, some will have to limit how much they heat their homes.

    This in turn could, say some experts, result in an increase in the number of people developing respiratory infections.

    Speaking about the research, the University of Bristol’s Professor Adam Finn said: “What is really surprising from our results is just how much other non-Covid respiratory infections there were during this time, other infections clearly didn’t just disappear.”

    Professor Finn added that “despite significant public health measures, including vaccination and non-pharmaceutical intervention such as masks, our findings show there was still a high incidence of non-COVID-19 disease causing hospitalisations alongside COVID-19 patients”.

    These findings in turn highlight the huge burden which faced and will continue to challenge the NHS, an organisation which has to balance non-Covid and Covid care.

    Post-doctoral Clinical Research Fellow Dr Catherine Hyams said: “Our results really highlight not only the huge burden of respiratory infection on the NHS and other healthcare systems, but also how bad things may get this winter.

    “It is therefore essential that appropriate healthcare planning and resource allocation is undertaken to care for patients with respiratory conditions, in addition to implementation of public health measures to reduce respiratory disease burden and improve patient outcomes.”

    When someone develops a chest infection it can cause a range of symptoms, including:• A chesty cough• Wheezing and shortness of breath• Chest pain or discomfort• A high temperature• A headache• Aching muscles• Tiredness.

    While non-Covid infections are set to play a role, this doesn’t mean COVID-19 would still play its part during a winter which, while still some way off, is already causing concern.

    As well as worries about price rises and inflation, experts fear an autumn wave could bring with it a variant more resistant to immunity conferred by reinfection or vaccination.

    The next wave of coronavirus is currently expected in early October, just as cases of cold and flu begin to rise. As a result, it will be harder for people to tell whether they have one of these viruses or COVID-19 without getting a test.

    On the coming winter, Professor Lawrence Young of the University of Warwick said: “The hope is that frequent reinfection will continue to provide a wall of immunity that protects from severe disease.

    “Booster jabs, particularly if modified to target Omicron, should also provide some protection from infection and transmission.”

    The recent wave of coronavirus was driven in large part by a sub-variant of Omicron known as BA.5 and another, more extensively mutated variant, known as BA.2.75, also known as Centaurus.

    On these new variants and their rise, Professor Yong said these cycles of infection “will continue for some time – perhaps another couple of years – until we have improved vaccines and better levels of population immunity”.

    As a result, a future sixth wave of the virus will likely not be the last the UK, or the rest of Europe, experiences.

    In the meantime, the current symptoms of coronavirus to be wary of are:• A high temperature• A new, continuous cough• Loss or change to your sense of smell or taste• Shortness of breath• Fatigue• An aching body• Headache• Sore throat• Blocked or runny nose loss of appetite• Nausea• Vomiting• Diarrhoea.

  • 46 минут назад 09.08.2022Health Care
    Cancer: Women with lung cancer likely to experience this symptom before diagnosis

    According to researchers from the Dana-Farber Cancer Institute, women with lung cancer are more likely to experience sexual dysfunction than men.

    Their conclusion was reached after analysis of responses from participants asked about their sexual activity before and after lung cancer.

    Discussing the study, lead researcher Narjust Florez said: “The SHAWL study is about bringing women’s sexuality to the forefront of scientific discussions because it has been significantly understudied.”

    Florez added: “When comparing the information before lung cancer diagnosis and after lung cancer diagnosis, the difference is staggering. Lung cancer significantly affects the sexual health of these women.”

    When said data was analysed, 77 percent of participants reported little to no interest in sexual activity with the most common reasons relating to fatigue, feelings of sadness, issues with partners, and shortness of breath.

    As a result of their findings, Florez said: “Sexual health should be integrated into thoracic oncology and further research is necessary to develop tailored interventions for patients with lung cancer. Patients whose sexual health is addressed have better quality of live, better pain control, and better relationships with their partners and their healthcare team.”

    While the study opens a window into sexual health and lung cancer link, further research is required into how deep this link goes.

    Furthermore, research is also needed on whether men’s sexual health is also affected by lung cancer, so a comparison can be made on whether one gender is impacted more than others.

    Lung cancer, by virtue of its presence in the cardiovascular system, has some similar symptoms to those of chest of infections, albeit with some important differences.

    The main symptoms of lung cancer include:• A cough which doesn’t go away after two or three weeks• A long-standing cough that gets worse• Chest infections that keep coming back• Coughing up blood• An ache or pain when breathing or coughing• Persistent breathlessness• Persistent tiredness or lack of energy• Loss of appetite• Unexplained weight loss.

    The NHS say anyone with these symptoms should immediately consult with their GP and get tested for the condition.

    However, while these are the most common symptoms of lung cancer, they aren’t the only signs. Less common symptoms can appear such as:• Change in the appearance of fingers• Difficulty swallowing• Wheezing• A hoarse voice• Swelling of the face or neck• Persistent chest or shoulder pain.

    Lung cancer is one of the most preventable cancers in the UK according to charities. As a result, there are ample ways for someone to effectively reduce their risk of developing the condition.

    Chief among these is not to smoke. Smoking is the most common cause of lung cancer, accounting for more than 70 percent of cases.

    As well as avoiding smoking or quitting if one partakes in this lifestyle habit, the NHS also recommend the two mainstays of healthy living, regular exercise and a balanced diet.

    Regular exercise improves cardiovascular health and strengthens the immune system by improving overall fitness.

    As well as smoking, lung cancer can also be caused by passive smoking; this occurs when someone breaths cigarette smoke exhaled from a nearby smoker, exposing them to toxins that person recently inhaled.

    Furthermore, exposure to harmful chemicals and carcinogens also increase someone’s risk, as these can increase the likelihood of harmful cell mutations which lead to the development of tumours.

    This exposure can come by accident or through occupational exposure if said occupation results in this risk.

    As well as these exposures, pollutions is becoming recognised as a risk factor for lung cancer with exposure to diesel fumes over many years increasingly the likelihood of development of the disease.

  • 2 часа, 46 минут назад 09.08.2022Health Care
    High blood pressure: The 3 popular types of meat you should ‘keep to a minimum’ – doctor

    Eating too much salt can massively raise a person’s blood pressure. Therefore any foods with an excess of salt should ideally be “avoided.” One expert spoke with Express.co.uk about how to maintain a healthy diet.

    GP and advisor for LoSalt, Doctor Sarah Jarvis, explained: “Excess salt in the diet is a major international health issue.

    “If salt intake fell by a third, it would prevent 8,000 premature deaths in the UK and could save the NHS over £500 million annually.

    “Salt raises blood pressure and high blood pressure can lead to heart disease, heart attack and stroke.”

    Around 9.5 million people in the UK are currently diagnosed with high blood pressure, with numbers rising since 2005.

    And it’s estimated that for every 10 people diagnosed with high blood pressure, seven remain undiagnosed and untreated.

    But some of the nation’s favourite foods could be making things worse.

    She warned specifically against eating too much bacon, ham and sausages due to their high salt content.

    “Keep processed meats to a minimum,” she said.

    Doctor Jarvis shared some other tips for reducing salt intake.

    She said: “Avoid seasoning and adding salt to food at home.

    “Using herbs, spices and lemon juice can be good alternatives to flavour your food instead.

    “Weaning yourself off salt can take some getting used to, but your palate will adjust.

    “If you can’t go without salt, I advise you to season with sense and use a reduced sodium salt like LoSalt instead.

    “It’s the sodium in salt which is linked to high blood pressure.”

    She added: “Don’t be duped into thinking posh gourmet sea and rock salts are better for you.

    “Some of these manufacturers make very misleading claims.

    “They all contain exactly the same amount of sodium as regular table salt and any other trace minerals will be present in such small quantities that you won’t get any benefit.”

    Blood pressure is measured by two numbers, the systolic pressure (the higher number) and diastolic pressure (lower).

    High blood pressure is considered to be 140/90 millimetres of mercury (mmHg) or higher (or 150/90mmHg or higher if you’re over the age of 80).

    Ideal blood pressure is usually considered to be between 90/60mmHg and 120/80mmHg.

  • 2 часа, 46 минут назад 09.08.2022Health Care
    Statins side effects: Study uncovers surprising truth behind 90 percent of side effects

    Statins are a controversial subject in medicine. The cholesterol-lowering drugs are the subject of countless studies exploring their impact on the body, and up to a third of people are said to suffer side effects. But a study by Imperial College London, in conjunction with the British Heart Foundation, puts everything about statins’ side effects into question.

    In the clinical trial, some participants were given statins while others were given a placebo pill – a treatment that doesn’t do anything to the body.

    Ninety percent of people in the study who experienced side effects because of what they thought were statins were actually consuming a placebo.

    This suggests the side effects are not caused by anything chemical.

    It’s a significant finding because many people choose to avoid the drugs because of worry about their side effects.

    “If I’m looking forward to a curry, thinking about it will make my mouth water. It’s not the food that’s making my mouth water, it’s my mind.

    Talking about the study, Professor Darrel Francis, a professor of Cardiology at the National Heart and Lung Institute at Imperial College London said: “Some people experience a reaction, and it may be real, without it being caused by the chemical effect of the statin.

    “Also, you might be unlucky and happen to get ill when you start taking a statin. So you stop taking it and your symptoms go away – but they could have gone away anyway.

    “Even if you try a second time, your body and mind could have linked the two, so you expect to feel ill when you take the statin, and you do.”

    Statins are designed to slow down the production of “bad” LDL cholesterol in the liver. Because there is less cholesterol being created, the body moves cholesterol from the blood back to the liver where it can be used to create bile. This causes a drop in your cholesterol levels.

    During the study, 62 participants were given 12 bottles of “medication” for a year. One bottle was consumed a month.

    In four of the bottles were statins, in another four were identical-looking placebo pills, and the last four were empty.

    Each month, participants were assigned a bottle at random to consume. They then recorded how they were feeling every day after consuming the pill. They rated how they felt on a scale of one to 100.

    In the end, they found people were likely to temporarily stop taking their placebo because of reported side effects. In fact, they were just as likely to stop taking them as the statins and felt better when they weren’t taking any tablets.

    According to the authors of the study, it points towards a “nocebo effect” where the negative perceptions people have about statins cause side effects rather than any chemical processes.

    They suggest that the side effects, such as aches and pains, might be a natural consequence of ageing.

    Doctor James Howard, Clinical Research Fellow at Imperial College London and Cardiologist at Imperial College Healthcare NHS Trust, said: “Our findings are significant because they are further evidence that side effects from statins are minimal.

    “These drugs play a significant role in keeping patients who are at risk of cardiovascular disease healthy.

    “One way to help encourage patients to take or stay on their medication is for doctors to talk to their patients about the nocebo effect. In more severe cases patients could be referred for talking therapies.”

    Statins are offered to patients when their level of LDL cholesterol becomes dangerous.

    Having high levels of LDL cholesterol can cause the hardening and narrowing of arteries due to the buildup of plaque.This can then lead to complications like coronary heart disease and heart attacks.

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Health Care Kennedy's disease: Doctors took over 20 years to diagnose navy captain's 'nasty' illness