Latest news with #SickleCell
ITV News
01-07-2025
- Health
- ITV News
Former Coronation Street star Victoria Ekanoye calls for more research into Sickle Cell disease
ITV Granada Reports entertainment correspondent Caroline Whitmore has been catching up with Victoria Ekanoye who lives with Sickle Cell disease. A former Coronation Street star who lives with Sickle Cell disease says research into the UK's biggest genetic blood disorder would be further ahead if it was not seen as a "black disease". Around 15,000 people live with the incurable condition which mostly affects those from African and Caribbean backgrounds. But Victoria Ekanoye says it can affect anyone of any ethnicity. The 43-year-old says she was "very quiet" about her own diagnosis when she was a younger woman but "shouts it from the rooftops" now because "we need the visibility". "People say that Sickle Cell is a black disease but it really isn't," she added. "Any single person can have the Sickle Cell gene. It developed as a mutation gene as a defence mechanism against malaria. "It may be controversial to say but if it wasn't a specific demographic that mainly struggled with this condition then we would be a lot further ahead in treatment." The mum-of-one, who starred in the ITV soap for three years, was diagnosed with Sickle Cell in her 20s and says she often experiences painful episodes and exhaustion. "My mum is a carrier, my father passed away from it and now my son is a carrier," she said. "I'm always tired, especially being a mum, but the main thing I experience is the Sickle Cell crises. "Something has happened along the way to cause my blood to not flow correctly and, when it does get clogged up in the veins, it can cause excruciating pain." Victoria, who is originally from Bury, supports the charity Sickle Cell Care Manchester which has just celebrated its 10th anniversary with a fundraising ball in Worsely, Salford. She said: "It has blown me away the amount of blood, sweat and tears of getting to 10 years. We asked everyone to wear read and everybody showed up. It was beautiful." What is Sickle Cell disease? It is a group of inherited conditions that affect the red blood cells and can cause pain, infection and in severe cases it can be life-threatening. The most serious type is called sickle cell anaemia. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels. It is a life-long disease and particularly common in people with an African or Caribbean family background. What are the symptoms of Sickle Cell disease? According to the NHS, people born with the blood disease tend to have problems from early childhood, although some children have few symptoms and lead normal lives most of the time. The main symptoms are: Episodes of pain known as sickle cell crises are one of the most common and distressing symptoms of sickle cell disease. More vulnerable to infections, particularly when young. Nearly all people with the disease have anaemia, where the haemoglobin in the blood is low. Some people also experience other problems, such as delayed growth, strokes and lung problems.
India Gazette
21-06-2025
- Health
- India Gazette
Home grown less than 50 rupees' test aiding fight against Sickle Cell Disease
New Delhi [India], June 21 (ANI): Sickle Cell Disease, a genetic blood disorder, leads to severe health complications such as anaemia, frequent pain episodes and other debilitating symptoms, affecting millions worldwide, especially in India and Africa. According to Dr Prabhakar Kedar, Scientist F, ICMR- CRMCH, Chandrapur India has indigenous validated 35 company kits and 23 kits with 100 % accuracy and low cost for Sickle Cell Anaemia detection, 'we have validated so far 35 company kits and 23 have shown 100 per cent sensitivity and 12 kits 95 per cent sensitivity.' The sample collection is done from a finger prick mixed with buffer solution, and results are obtained in a few minutes. 'A drop of capillary blood (usually from a finger prick) is collected. 2. The blood is mixed with buffer solution and placed on the test strip or cassette, 3. Reaction: The test uses antibodies to detect different haemoglobin variants (HbA, HbS and control band).' He explained 'Colored lines appear on the strip within 10 minutes to indicate the presence of normal haemoglobin (HbA), sickle haemoglobin (HbS), and control band.' He said. On utilisation of these kits, he said 2 kits per month are used, and for each kit we use 50 Sickle homozygous blood samples, 50 heterozygous and 50 normal blood samples.' 'We used blood samples, which were first confirmed by the HPLC method, which is the gold standard for diagnosing sickle cell anaemia, ' he said. To support the fight against Sickle Cell Disease (SCD), two centres- ICMR-NIIH in Mumbai and CRMCH in Chandrapur, have been officially chosen by the government to test and approve new diagnostic kits. 'ICMR NIRRCH, along with PGI Chandigarh and ICMR-NIIH, conducted a comprehensive assessment and determined that point-of-care tests for Sickle Cell Disease/Trait among the high-risk population in India would be cost-effective if procured at INR 100 per test or below. Following the HTA recommendation, the National Health Mission instructed state health departments to procure the diagnostic kits at a maximum price of INR 100 per test. Through public tendering, the competitive procurement process drove the price of the kits down to INR 82 per test, significantly below the initial quote, resulting in a saving of Rs 1,857 crores. Subsequently, ICMR-NIIH has validated new kits, and further to it, the manufacturer has agreed to sell the kits at INR 50 per test,' states ICMR-CRMCH. These efforts are a big boost for the National Sickle Cell Elimination Mission, which aims to eliminate the disease from India by 2047. (ANI)
Hans India
20-06-2025
- Health
- Hans India
Eradication possible through awareness: Collector
Vijayawada: NTR district collector Dr G Lakshmisha on Thursday emphasised that Sickle Cell Anaemia can be eradicated through comprehensive awareness, announcing large-scale awareness programmes which commenced on June 19. He highlighted a robust action plan in place to curb the disease, with a specific focus on tribal areas. On Thursday, to mark World Sickle Cell Day, the District Medical and Health Department organised a Sickle Cell awareness programme at the Kondapalli Tribal Welfare Girls' School. Collector Lakshmisha, along with other officials, unveiled posters, pamphlets, and manuals related to the Sickle Cell Anaemia Eradication Mission and comprehensive disease information. Speaking at the event, the collector stressed the urgent need to create widespread awareness about the disease across various segments of society, as part of the mission to eradicate Sickle Cell Anaemia even before 2047. He explained that while healthy red blood cells are typically round, in Sickle Cell Anaemia, these cells are crescent-shaped. He clarified that the disease is hereditary, passed from parents, and is not contagious. He added that the disease can be diagnosed through a simple blood test. He reassured that individuals with Sickle Cell Anaemia need not worry, as timely identification and proper medical care can significantly improve a patient's quality of life.
Daily Mirror
19-06-2025
- Entertainment
- Daily Mirror
Love Island star's healthy cousin, 28, dies suddenly from 'terrible' condition
Love Island star Konnor Ewudzi has revealed that his family "suffered terribly" due to Sickle cell - and even lead to the devastating loss of his cousin at just 28-years-old. Love Island contestant Konnor Ewudzi is raising awareness for World Sickle Cell Day (June 19) by sharing the devastating effect of the condition, effecting a large majority of his own family. Sickle cell is a genetic condition that affects the development of a person's red blood cells, where they develop into crescent shapes that can create blockages of blood vessels. These blockages of cells cause a lot of pain and even damage organs. Konnor, who starred in the 2024 season of Love Island, and now works as a barber in Cornwall, shared how he was lucky enough not to inherit the genetic condition that requires two parents who both have the gene. He explained: "I am on one of the lucky ones. My Mum Siobhan is mixed race, and she didn't carry the trait, which is why I am so fortunate," charting his "luck" to his mother's mixed heritage. However the rest of his family were not so lucky. Konnor shared how his father Godfrey, sister Billie-May, Auntie Freda, Uncle Richard and late Cousin Alexander "suffered terribly growing up, with hospital visits and blood transfusions required to help them with their pain" due to Sickle cell. Leaving a permanent effect on his family, the Love Islander opened up about the death of his cousin due to the condition. He said: "My cousin, Alexander was born with sickle cell. He died at just 28, out of the blue". Alexander's death was unexpected, occurring just after he graduated from Cambridge University as an architect. "He was not sick or suffering any long term illnesses – his organs just gave up one day. It is so sad that this can rob us of such beautiful lives at such young ages. Testing is so key. And blood giving even more so," Konnor said. In an effort to avoid further tragedy, Konnor's family now advocate for testing of Sickle Cell. "Seeing the way it has affected Freda, my Brother Richard and the sad loss of my late nephew, Alexander, is just heart-breaking. We just want to help more people avoid what we went through if possible," his dad, Godfrey, explained. The star's sister, Billie-May, a sufferer of Sickle Cell, added: "[Testing] is definitely something I have to think about when I meet a new partner. Like it is on my mind when I start dating someone new – I don't talk about it much but it is really important young people are aware of it". To raise awareness and encourage people to test for the debilitating disease, Konnor's family gathered in Abbey Wood's estate, East London, for a photoshoot to highlight the effects the condition has on real people and families. Abbey Wood is the location of where Netflix 's Supacell was filmed, with Konnor highlight how the hit series excellently raised awareness for the condition. He said: "The series did an amazing job of highlighting the condition to the public, but there is so much more people need to know". Help us improve our content by completing the survey below. We'd love to hear from you! Affecting over 18,000 people in the UK, Rachel Simpson, the communications officer and SEL lead mentor for Sickle Cell Society, urges anyone who is unsure of their genotype to get tested before planning a family planning, should they wish to. Rachel said: "What we really need more than anything is for people to give more blood. Blood transfusions are the main treatment process for people with the disorder, and many don't know that people with the trait can give blood. It's so important to donate if you can". Konnor also pointed out that 'one blood unit or donation which takes 20 mins can help up to three patients" and that he hopes, by sharing his story, the numbers of unit donations increase.
Scotsman
19-06-2025
- Entertainment
- Scotsman
'Sickle cell isn't just on Supacell': Konnor Ewudzi and his family open up about their experience on World Sickle Cell Day
'My entire family has been affected by Sickle Cell' Konnor Ewudzi speaks openly while sitting on the steps of the Abbey Wood estate, which shot to fame as the setting for Rapman's Netflix blockbuster SUPACELL Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... 'The series did an amazing job of highlighting the condition to the public, but there is so much more people need to know.' Sickle Cell Disorder is a genetic condition which affects the red blood cells – where they develop into a crescent shape, this can cause blockages of the blood vessels leading to pain and potential organ damage. Advertisement Hide Ad Advertisement Hide Ad For someone to be born with Sickle Cell, two parents carrying the 'trait' have to come together. This is why testing is so important. Konnor's family are very close 'For me, I am on one of the lucky ones. My dad (Godfrey) carries the trait, so does my sister Billie-May. My mum Siobhan is mixed race, and she didn't carry the trait, which is why I am so fortunate. "But my auntie Freda, uncle Richard and late cousin Alexander, were not so lucky. They suffered terribly growing up, with hospital visits and blood transfusions required to help them with their pain and suffering.' The Rugby Presenter and Love Island star gently gathered family members on Monday, June 16 at the Abbey Wood estate to capture these special images, designed to show how big the impact of Sickle Cell can be on just one family. Advertisement Hide Ad Advertisement Hide Ad 'My cousin, Alexander was born with sickle cell. He died at just 28, out of the blue. He had just graduated from Cambridge University as an architect. He was not sick or suffering any long term illnesses – his organs just gave up one day. The Ewudzi's on the steps of the Netflix hit series SUPACELL which focuses on the condition "It is so sad that this can rob us of such beautiful lives at such young ages. Testing is so key. And blood giving even more so.' 'It is definitely something I have to think about when I meet a new partner,' Konnor's sister Billie-May said. 'Like it is on my mind when I start dating someone new – I don't talk about it much but it is really important young people are aware of it." 'Seeing the way it has affected Freda, my brother Richard and the sad loss of my late nephew, Alexander, is just heartbreaking. We just want to help more people avoid what we went through if possible,' said Godfrey. Advertisement Hide Ad Advertisement Hide Ad 'We had Billie-May and Konnor tested when they were really little. It was a nerve-racking time, but it had to be done. We are the lucky ones," agreed Siobhan, Konnor's mum. Konnor and his family headed to the Abbey Wood Estate where SUPACELL was filmed The national campaign for awareness this year is called 'TELL IT LOUD' – asking all those with Sickle Cell or the trait to share their experiences and help educate the nation on this largely misunderstood condition. 'This affects over eighteen thousand people in the UK – we urge those who may not know their genotype to get tested before family planning.' Rachel Simpson, Communications Officer & SEL Lead Mentor for Sickle Cell Society said. 'What we really need more than anything is for people to give more blood. Blood transfusions are the main treatment process for people with the disorder, and many don't know that people with the trait can give blood. It's so important to donate if you can.' Advertisement Hide Ad Advertisement Hide Ad Konnor continued: 'One blood unit or donation which takes 20 mins can help up to three patients – so it really is an incredibly easy way to help Sickle Cell sufferers. There are blood donation centres all over the UK so we are hoping the numbers go up after sharing our personal stories.' Love Island's Konnor Ewudzi and family have shared their personal stories on Sickle Cell Disorder John James OBE, Chief Executive of the Sickle Cell Society said: 'Sickle cell disorder is the UK's fastest growing genetic condition, but people living with it still face too much silence and too little support. That's why we're asking people to 'Tell It Loud' this World Sickle Cell Day — by sharing their story, giving blood, and getting MPs to support better employment rights for people living with the condition. We're so grateful to Konnor for sharing his story and helping us shine a light on sickle cell and the urgent need for more action, more awareness and more black heritage blood donors.'
