Latest news with #neuromusculardisease
The Sun
6 days ago
- Health
- The Sun
Tennis legend Monica Seles, 51, diagnosed with rare muscle-weakening condition as she bravely opens up
TENNIS great Monica Seles revealed she has been diagnosed with a rare muscle-weakening condition. Seles, 51, started experiencing double vision and extremely depleted strength in her arms and legs in 2019. 2 A long string of tests and scans - delayed by the Covid pandemic - ruled out brain tumours and motor neurone disease. The nine-time Grand Slam champion was eventually diagnosed with myasthenia gravis (MG) in 2022. Now Seles has gone public on neuromuscular autoimmune disease - which currently has no cure - and will raise awareness for the condition with an event around this month's US Open. MG affects most of the body but particularly the muscles that control the eyes - although symptoms can vary from day to day. Approximately 15-20 people per 100,000 - or 0.015 per cent of the population - are affected by MG, which sees the immune system attack the neuromuscular junction where nerves and muscles communicate. Seles told AP: "I would be playing [ tennis ] with some kids or family members, and I would miss a ball. "I was like, 'Yeah, I see two balls.' "These are obviously symptoms that you can't ignore. "It took me quite some time to really absorb it, speak openly about it, because it's a difficult one. "It affects my day-to-day life quite a lot." BBC presenter taken to hospital after 'real wake up call' working at Wimbledon and putting off medical care Seles won seven of her nine Grand Slams by the age of 18. That included reaching eight Major finals in a row - winning seven - before she was tragically stabbed in April 1993 on court during a match in Hamburg by a fixated fan of Steffi Graf. The Yugoslavia-born star - who switched nationality to USA - returned in 1995 after a two-year absence. She reached the US Open final in her first Major since the stabbing then won the 1996 Australian Open, her ninth and final Grand Slam title. The lefty, who played with a double-handed forehand and backhand, officialy retired in 2008 five years after her final competitive match. Now living in Florida, she told The Athletic about her MG diagnosis: 'I thought, 'OK, just push through it.' "But a couple of instances happened when — on court and in daily life — I realised there was something going on. What is myasthenia gravis? MYASTHENIA GRAVIS is a rare long-term condition that causes muscle weakness. It typically has phases when it improves and phases when it gets worse. MG usually affects most of the body, spreading from the eyes and face to other areas over weeks, months or years. But for some people with myasthenia gravis, only the eyes are affected. It is common for people to have "flare-ups", where symptoms are very troublesome, followed by periods of remission, where symptoms improve. It's an autoimmune condition, which means it's the result of the immune system (the body's natural defence against infection) mistakenly attacking a healthy part of the body. In myasthenia gravis, the immune system damages the communication system between the nerves and muscles, making the muscles weak and easily tired. It can affect people of any age, typically starting in women under 40 and men over 60. Common symptoms of myasthenia gravis include: droopy eyelids double vision difficulty making facial expressions problems chewing and difficulty swallowing slurred speech weak arms, legs or neck shortness of breath and occasionally serious breathing difficulties The symptoms tend to get worse when you're tired. Many people find they're worse towards the end of the day, and better the next morning after getting some sleep. Source: NHS "After coming out of my former country to the IMG Academy, I had to totally reset. "When I became No1, it was a huge reset because everybody treats you differently. "Then obviously when I got stabbed, that was a huge reset. And then when I was diagnosed, it was a huge reset. "The day-to-day part of managing it, depending on my symptoms, is really adjusting, you know. I think anybody else who has Myasthenia Gravis knows it's a continuous adjustment. "After my stabbing, I had to deal with that internally for quite a few years to process it and my MG diagnosis was kind of very similar. "I had to understand my new normal of day-to-day life, what I can do work-wise and different things."
Sky News
6 days ago
- Health
- Sky News
Tennis legend Monica Seles 'learning to live with a new normal' after being diagnosed with rare disease
Nine-time Grand Slam tennis champion Monica Seles has revealed she is "learning to live with a new normal" after being diagnosed with a rare chronic neuromuscular disease three years ago. Seles was told she has myasthenia gravis (MG), a condition which causes muscle weakness, in 2022. The 51-year-old has told the Associated Press she first noticed the symptoms of the disease while she was playing tennis. The Serbian-American tennis great said: "I would be playing with some kids or family members, and I would miss a ball. I was like, 'Yeah, I see two balls'. "These are obviously symptoms that you can't ignore. "And, for me, this is when this journey started. And it took me quite some time to really absorb it, speak openly about it, because it's a difficult one. It affects my day-to-day life quite a lot." Seles, who won her first major trophy at age 16 at the 1990 French Open and played her last match in 2003, also experienced weakness in her arms and legs and said "just blowing my hair out... became very difficult". She said she had decided to speak publicly about her condition for the first time ahead of the US Open, which starts on 24 August, to raise awareness. America's National Institute of Neurological Disorders and Stroke calls it "a chronic neuromuscular disease that causes weakness in the voluntary muscles" and "most commonly impacts young adult women (under 40) and older men (over 60)" but ... can occur at any age, including childhood". It is an autoimmune disease - used to describe a condition where the body's immune system mistakenly attacks its own healthy cells, tissues, and organs. The US National Institutes of Health has said it affects around 1 in 5,000 people. Seles, who was inducted into the International Tennis Hall of Fame in 2009, said she'd never heard of the condition until she saw a doctor about her symptoms and was referred to a neurologist. "When I got diagnosed, I was like, 'What?!'," said Seles, who is partnering with argenx, an immunology company headquartered in the Netherlands, to promote their Go for Greater campaign which aims to help people with MG. "So this is where - I can't emphasise enough - I wish I had somebody like me speak up about it." It's been three decades since Seles returned to competition at the 1995 US Open, making it to the final, more than two years after she was attacked by a man with a knife at a tournament in Hamburg, Germany. "The way they welcomed me... after my stabbing, I will never forget," Seles said about the fans in New York. "Those are the moments that stay with you." Seles said she is learning to live a "new normal" nowadays and characterised her health as another in a series of life steps that required her to adapt. She said: "I had to, in tennis terms, I guess, reset - hard reset - a few times. I call my first hard reset when I came to the US as a young 13-year-old (from Yugoslavia). Didn't speak the language; left my family. It's a very tough time. Then, obviously, becoming a great player, it's a reset, too, because the fame, money, the attention, changes (everything), and it's hard as a 16-year-old to deal with all that. Then obviously my stabbing - I had to do a huge reset."
Yahoo
17-06-2025
- Business
- Yahoo
Dyne Therapeutics to Host Investor Conference Call and Webcast to Provide Update on DYNE-101 for Myotonic Dystrophy Type 1, Tomorrow Tuesday, June 17 at 8:00 a.m. ET
WALTHAM, Mass., June 16, 2025 (GLOBE NEWSWIRE) -- Dyne Therapeutics, Inc. (Nasdaq: DYN), a clinical-stage neuromuscular disease company focused on advancing innovative life-transforming therapeutics for people living with genetically driven diseases, today announced it plans to provide an update on DYNE-101 in myotonic dystrophy type 1 (DM1) tomorrow, June 17, 2025, and to host a webcast at 8:00 a.m. ET. The company intends to issue a press release prior to the start of the event. Investor Conference Call and Webcast The live webcast will be available on the Events & Presentations page of the Investors & Media section of Dyne's website, and a replay will be accessible for 90 days following the presentation. An accompanying slide presentation will also be available. To view the live webcast and replay, please visit About Dyne Therapeutics Dyne Therapeutics is discovering and advancing innovative life-transforming therapeutics for people living with genetically driven neuromuscular diseases. Leveraging the modularity of its FORCE™ platform, Dyne is developing targeted therapeutics that are designed to overcome limitations in delivery to muscle tissue and the central nervous system (CNS). Dyne has a broad pipeline for neuromuscular diseases, including clinical programs for myotonic dystrophy type 1 (DM1) and Duchenne muscular dystrophy (DMD) and a preclinical program for facioscapulohumeral muscular dystrophy (FSHD). For more information, please visit and follow us on X, LinkedIn and Facebook. Contacts:InvestorsMia Tobiasir@ 781-317-0353 MediaStacy Nartkersnartker@ 781-317-1938
Daily Mail
13-06-2025
- Health
- Daily Mail
EXCLUSIVE Schoolboy, 8, diagnosed with terminal illness after GPs dismissed symptoms as dyspraxia for two years
A schoolboy's incurable disease was written off as dyspraxia by doctors for two years before he was diagnosed with a life-changing terminal condition. Eddie Worman, then six, first caused concern after his mother Rachel, 39, noticed he was struggling to walk upstairs. After two years of GP and physiotherapy appointments, Eddie's worried family finally received clarity and in April 2024 were told their son had Duchenne Muscular Dystrophy (DMD). The debilitating neuromuscular disease leads to muscle wastage and weakness and Eddie is one of just 2,500 sufferers across the whole of the UK. Now Eddie's family, including his sisters Maisie, 13, and Olive, 10, have launched a GoFundMe page to raise money for his ongoing care and to buy a specialised wheelchair before his condition worsens. The mother-of three and her husband, carpet fitter Adrian, 46, first became concerned more than two years ago after noticing their little boy appeared to struggle with his mobility. Rachel told MailOnline: 'I took him to the GP initially, because I was worried about the fact that he was really struggling with stairs. He was struggling with his mobility in terms of having to clutch hold of his legs and his thighs in order to climb the stairs. 'I just thought "that cannot be normal for a three to four-year-old should be tearing up and down the stairs". And obviously I had his two older sisters to compare him to. 'He wasn't complaining of pain per se, but it was general little things like, if he was sitting on the floor he wouldn't just jump up like a child would normally, he would clutch hold of his side, or he'd have to hold onto a piece of furniture.' She added that it became even more noticeable when he went to school and she was regularly called in after he had been injured while playing. 'When he got to school I was getting called constantly that he was in and out of the medical bay, and he was sustaining head injuries where he wasn't able to duck out of the way when he'd have children of his own age hurtling towards him and playing games', she said. Rachel explained she went to the GP and raised her concerns but explained the doctor did not seem particularly worried. The mother-of-three persevered and her little boy was eventually seen by an occupational therapist. After a three-hour assessment Rachel was given the news that Eddie had dyspraxia but that it would need to be confirmed by a paediatrician. Dyspraxia is a common developmental co-ordination disorder (DCD) that affects movement and co-ordination according to the NHS. In a follow-up appointment in March 2024, Rachel was told it wasn't dyspraxia but was instead DMD. She nurse said she was left in complete shock and said: 'I never thought for one second it was anything muscular related because even me in a medical profession, I hadn't really heard of Duchenne.' She explained that she went in to 'complete panic mode' and was angry at the length of time it had taken Eddie to be diagnosed. She added that the terminal diagnosis 'devastated' their family and now they're focusing on how Eddie's life can be made comfortable. Those with DMD have a significantly shorter life expectancy, with the average person only living to between 22 and 30 years of age and many dying of heart and lung failure. She said: 'As a parent you can't bear the idea that there is anything physically wrong with your child, or that they're going to struggle in any way, shape or form throughout their life.' Following his diagnosis, Eddie has been on a strict routine of medication, physio and hospital appointments. The eight-year-old takes six doses of steroids a day and has 45 minutes of intense physio in the morning and another session in the evening as well as wearing leg braces each night. Normal activities are difficult for the family-of-five and Rachel explained that they struggle to go out to the cinema and says she didn't realise what she took for granted before. She said: 'It's grueling. Everything sort of happened and changed overnight.' Rachel added that she finds it difficult to navigate the world with Eddie and said it has become 'glaringly obvious' to her the world is 'not designed for children with disabilities'. She said the family can't even make a quick trip to Tesco because Eddie becomes too tired and needs to be carried through the supermarket. Rachel also confessed she is worried about school and told MailOnline that while his friends make sure to include him in games where they can there are some things he can't do. 'At sports day they make sure he is still included but even playing hide and seek with friends, he just can't keep up,' she said. Now Rachel and Adrien are crowdfunding to help them with the increased costs of looking after Eddie. The worried mother told MailOnline that they're looking in to moving to a more accessible house because their current family home is simply not suitable for his needs. Changes they need to make include converting a garage in to a downstairs wet room, adding a lift and even converting their loft. Rachel said the couple are looking at a 'financially difficult future' and the nurse added she now 'lives to work' to make sure they can afford specialist equipment including a power assisted wheelchair for Eddie. Eddie's parents explained that he is not eligible for one under the NHS and they can cost upwards of £1,000. Rachel has also found support from other parents whose children are battling the condition and added that Facebook and Whatsapp communities have been invaluable. She said: 'My biggest support was from those parents, because they understand they understand exactly what you're going through. I reached out to them as soon as Eddie was diagnosed because I was so lost.'
