Latest news with #blooddisorder
BBC News
4 days ago
- Entertainment
- BBC News
Mum 'amazed' by response to drive-by request for son's birthday
The mother of a "machine-mad" boy whose fifth birthday party plans in September have had to be cancelled because his little sister will be recovering from treatment for a rare blood disorder said she was overwhelmed by everyone's kindness and Sherratt's mum Lauren posted an appeal on social media for "basically anything fast and loud with wheels" to do a drive-by outside their home in Bury, Greater Manchester. She said she "couldn't get over" how many offers she had received from people with motorbikes, Mustang cars and 4x4 trucks from as far away as Scotland. She told BBC Radio Manchester: "The response has been absolutely incredible, we've had hundreds of messages!" Lauren added: "It's a really difficult time for us as a family... it's just really heart-warming that complete strangers would do this for us."I'm just amazed."She said Ozzy's 16-month-old sister Isla was diagnosed in May with "very severe" aplastic anaemia, a disorder which prevents her bone marrow from producing enough blood means the family has spent the last few months going in and out of Manchester Children's Hospital so she can get regular transfusions of blood and will have a bone marrow infusion in August, after which the family will have to spend a period of time isolating from other people while her immunity is compromised. Lauren said she wanted to make sure Ozzy did not miss out."He's been through such a tricky time with his little sister who he loves to the end of the earth," she explained. She said Ozzy had always been obsessed with machines and vehicles, and used to watch the film Cars every day. Of her little boy, she said: "He's fast, he's loud, he's himself!"He's an amazing kid and he really deserve all this." Lauren said her family had also received offers from local businesses to help make her son's big day an incredibly special one."A local baker has said she will make cakes for Ozzy. People have said they'll make t-shirts for him," she said. "It just shows us there are a lot of kind people in the world, especially in Bury, but also around the country." Listen to the best of BBC Radio Manchester on Sounds and follow BBC Manchester on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
BBC News
13-07-2025
- Health
- BBC News
Ipswich teen's memory to live on through sickle cell foundation
The grieving sister of a 15-year-old girl who died with sickle cell disease says she wants to honour her memory by raising awareness of the blood from Ipswich, was born with the life-threatening condition which causes intense pain when blood vessels become blocked by misshapen red Chantry Academy pupil appeared to be rallying after a bone marrow transplant from sister Chelsea, but she deteriorated last month and died on 1 July. "We were really hopeful. We thought the transplant went really well, but it went downhill, which has been a huge shock," said Chelsea. "She fought it for a long time and was always able to get back up."It was always very difficult to watch, because as an older sister you want to protect your younger sibling, but I was always encouraged by her strength." About 15,000 people in England live with the inherited condition, which affects people mainly of Black African and Black Caribbean blood cells are produced in a sickle shape and are stiff and sticky rather than flexible smooth discs, and they do not live as long as healthy red blood cells can clump as they travel around blood vessels – reducing oxygen to vital parts of the body, putting people at risk of organ damage, stroke and heart failure, and leading to a greatly reduced quality of had received care at Ipswich Hospital, Addenbrooke's Hospital in Cambridge, and St Mary's Hospital in London, with the family encountering some clinicians who did not fully understand the is one of the reasons why Chelsea and her parents want to honour Vivica with a foundation called LLV (which stands for Long Live Vivica).The acronym was created by friends who were deeply affected by her death, with some of them scrawling her name or LLV on the back of their school shirts, Chelsea said."We have always discussed shining a light on sickle cell disease," she said."It's the biggest growing blood condition in the UK but I feel it's really under-represented."It was really traumatic experience for us, and we wouldn't want anyone to go through this."The foundation would support children and family members affected by the condition and raise its profile, including with policymakers and in schools. "I know it's something she would have wanted," Chelsea 25, said she and Vivica would spend "countless hours" together having fun, and would chat late into the evenings. "Having her as my sister was an absolute joy for me; we were really close," she added."She adored being around other people. She really came out when she was around her close friends, especially planning things, doing make-up – she was really girly." Follow Suffolk news on BBC Sounds, Facebook, Instagram and X.
The Guardian
01-07-2025
- Health
- The Guardian
How digital health tools helped a family navigate a rare diagnosis
When Tim and Jeannie Kirkland's son, Oskar, was diagnosed with a rare blood disorder at just two years old, they began a seven-year journey through the Australian health system. Oskar has immune thrombocytopenia (ITP), a condition that causes unusually low platelet counts and can result in severe bruising and bleeding. While the initial prognosis was reassuring – most childhood cases of ITP resolve within weeks – Oskar's condition didn't follow the typical script. 'Weeks passed and he was still getting irregular bruising in soft spots you wouldn't expect to see: under his eyes and on his belly and back,' Jeannie says. Blood tests revealed consistently low platelets, which are essential for blood clotting. Oskar's treatment included regular blood tests – at times daily – as well as steroid courses and, eventually, immunoglobulin therapy when he was flown to Perth after falling and hitting his head. The Kirklands coordinated care across multiple providers and locations, regularly making the seven-hour drive from Kalgoorlie to Perth with Oskar and their three other children for what was often just a 20-minute specialist appointment. Oskar has immune thrombocytopenia (ITP), a condition that causes unusually low platelet counts and can result in severe bruising and bleeding. They juggled hospital stays, test results, different pathology services, prescriptions and follow-ups with multiple specialists, who frequently couldn't access previous test results from other providers and needed Oskar to endure repeat testing. Tim says: 'Doctors love data and so they were always wanting to do more tests on Oskar – they've got a case they're trying to solve.' Tim and Jeannie became concerned about subjecting their little boy to so many tests, some of which were invasive, while also wanting the best possible care for him. This changed when their GP suggested they make use of My Health Record to access Oskar's key health information in one place. They could now better track Oskar's health and were more easily able to show doctors a record of test results to reduce the need to have them done again. Access to My Health Record and, in particular, the test results, gave Oskar's parents the opportunity to review his results and be informed of early warning signs that could be a red flag for changes in his health. This information proved even more useful for Oskar's parents when the family moved from Western Australia to Tasmania in 2023. 'It was a huge benefit to move to Tasmania, find a GP here, and be able to say, 'here's everything that's happened in the last five years',' Tim says. 'It was just really, really great to have all that history and information in one place.' Dr Amandeep Hansra, a GP and the chief clinical adviser (medicine) at the Australian Digital Health Agency, says the system is designed to empower Australians to manage their health. Dr Amandeep Hansra, chief clinical adviser (medicine), consulting with a patient. 'Knowledge is power,' Hansra says. 'Having access to information about your own healthcare helps you be more proactive about it, helps you be more involved and, ultimately, feel more in control.' My Health Record also makes Hansra's work as a GP easier. 'Digital records accelerate the diagnostic process,' she says. 'If I can actually access the information that I need about a particular patient at the point that I'm seeing them, ultimately it's going to lead to better health outcomes.' A new patient from interstate came to see Hansra recently, needing antibiotics for an infection. The patient told Hansra she was allergic to an antibiotic but couldn't remember which one. It was a public holiday, so Hansra couldn't reach the patient's regular GP clinic to find out. Instead, she checked My Health Record and saw that the patient had been hospitalised recently. She could see not just the hospital discharge summary, but the antibiotic listed in the allergies section. My Health Record also gives doctors instant access to a patient's immunisation history, including tetanus, on the Australian Immunisation Register, to which reporting on all vaccinations has been mandatory since 2024. If a patient has come in after cutting themselves at the beach, for example, and can't remember when their last tetanus shot was, a doctor would usually err on the side of caution and give them the shot. 'Now we can go to just one place, My Health Record, look at their immunisation history, and see the list along with other important health information,' Hansra says. More than 24.3 million Australians have a My Health Record. Almost every GP and pharmacy in the country is connected. More medical specialists are registering for My Health Record by the day, as are allied health professionals such as physiotherapists, who are seeing the value in multi-disciplinary teams accessing the same information. Legislation introduced early in 2025 means it will soon be mandatory for pathology and imaging reports to be uploaded to My Health Record by default. With consistent access to this central source of information, patients and health professionals alike can make more informed decisions, reducing unnecessary tests and improving the safety and speed of care. When an unconscious or seriously unwell patient arrives in hospital by ambulance, for example, emergency department medical teams can now check a patient's My Health Record to see, at a glance, their health history, any medications they're on and whether they're allergic to anything. 'It helps take the guesswork out of the assessment they're doing on that patient,' Hansra says. It's also proving invaluable for people with complex health conditions and chronic diseases, who may take multiple medications and see a series of medical specialists and allied health practitioners. 'It really helps having that central point where they can keep that information,' Hansra says. She encourages everyone to take advantage of My Health Record, seeing it as a win-win for patients and health professionals alike. 'Everybody should jump on board, use it, get familiar with it. Having all your health information in one spot makes it so much easier for you and for the healthcare team that supports you.' The my health app makes it easier for people to access key information about their health on their phones. It offers a secure and convenient way for people to view information that they, their healthcare providers or representatives have uploaded to My Health Record. It also provides access to electronic prescriptions and the active script list for those juggling multiple scripts, and has other features, such as the 'Find and book a health service' tool. 'It's the digital front door for health services,' Hansra says. 'They can go into the app and see their key health information, and that allows them to have control over their own health journey.' Oskar turns nine this year and his condition has stabilised. Jeannie says: 'He's just thriving. He's such an amazing little kid.' Tim and Jeannie Kirkland and their four children His dad agrees. 'From the age of two, he's just taken it in his stride,' Tim says. 'From time to time he'll talk about his 'dodgy blood' but he does all the things that a boy his age would do: he plays soccer, rides his bike and this year he's started running. It doesn't limit anything he does but we keep an eye on him and are aware this might be something that's with him for the rest of his life.' Tim is grateful that all four of their kids will have access to their own complete and accurate health record when they grow up and leave the nest. 'It's really great for their future,' Tim says. 'They'll have their whole medical history available to them.' Jeannie, a nurse by training, also likes the reassurance of knowing Oskar's records are accessible when they travel as a family, with the my health app installed on their phones. 'On holidays, we like knowing that no matter where we go, if we need to we can access that history,' she says. 'It's very empowering.' Get started with digital health by downloading the my health app today.
BBC News
28-05-2025
- General
- BBC News
Donor found for Crawley girl with rare blood disorder
A stem cell donor has been found for a 10-year-old girl with a rare and potentially fatal blood disorder after a campaign to find a from Crawley in West Sussex, was diagnosed with aplastic anaemia in October after unexplained bruising on her a long wait, her family has now received the news that someone from the register of charity DKMS has been identified as a match after a campaign for more people to come mother, Mobeen, said: "You hear so much negative news every day, but seeing people respond as they have really restores your faith in humanity." She added: "If that person hadn't done a quick cheek swab and joined the donor register, we might still be waiting, and our daughter's future might still be hanging in the balance."Doctors said Amilah did not need the transplant yet, but could need one anaemia occurs when the bone marrow cannot make enough new blood cells for the body to work normally, making it harder to fight infection, stop bleeding or carry oxygen.A transplant introduces healthy stem cells into the bloodstream to help produce new blood cells. As Amilah - whose name means hope in Arabic - has Pakistani heritage, she is more likely to have a unique tissue meant she was less likely to find a donor on UK registers compared to patients from white, northern European doctors told Mobeen a stem cell transplant was the only hope for a cure for her daughter's condition, she called for more people from ethnic minorities to sign up to become cancer and disorder charity DKMS said just 2.4% of the UK population was on its donor register - with 16% being from ethnic minority part of World Blood Cancer Day on Wednesday, Amilah and her mother are urging everyone aged between 17–55 and in good general health to order a free swab kit on the DKMS website to be added to the register.
