Latest news with #WorldSickleCellDay
Hans India
24-06-2025
- Health
- Hans India
Dire need to identify new drugs for patients with sickle cell disease: ICMR scientist
New Delhi: Identifying new drugs for patients with sickle cell disease is very important, said a senior scientist at the Indian Council of Medical Research (ICMR). Speaking to IANS, Dr. Manisha Madkaikar, Director of ICMR- Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur, shared that among many drugs only hydroxyurea therapy has so far been effective. Hydroxyurea has also been included in the National Health Mission's essential drugs list. However, the drug remains ineffective in many patients, prompting the need to find new and better treatments. 'We have known sickle cell disease for now so many decades. But it is only hydroxyurea therapy that has stood the test of time. Hydroxyurea significantly helps in improving the quality of life and complications in sickle cell disease patients,' Madkaikar said. 'However, there are some patients who do not respond to hydroxyurea therapy. Another drawback with hydroxyurea therapy is the patients have to take treatment lifelong, so that is the reason why a better drug is something which is desired, a better mode of therapy is desired,' she told IANS. The ICMR scientist said this even as the government, last week, announced an award of Rs 10 crore to develop a drug for the treatment of sickle cell disease. The tribal affairs ministry, in collaboration with the AIIMS-Delhi, will undertake a competition for the development of the drug. The selected proposal will be funded up to Rs 10 crore, said Union Minister of State for Tribal Affairs Durgadas Uikey at an event to mark World Sickle Cell Day in the national capital. Uikey also announced the institution of the Bhagwan Birsa Munda Prize for the development of a drug to treat the disease. Sickle cell disease is a genetic disorder mostly prevalent in districts with high tribal populations. About one in 86 births among STs have sickle cell disease which affects haemoglobin in red blood cells, resulting in morbidity and mortality. Madkaikar noted that there is a lot of research going on apart from bone marrow transplantation and gene therapy, which is available outside India but currently not available in India. 'We do not have any other drug which has shown promise like hydroxyurea therapy. So, there is a lot of scope or there is a lot of need for identifying such medicines which will transform the lives of patients with sickle cell disease,' the scientists said.
Time of India
20-06-2025
- Health
- Time of India
World Sickle Cell Day marked with awareness drive at Rughwani Hospital in Nagpur
1 2 3 Nagpur: On the occasion of World Sickle Cell Day (June 19), the Thalassemia and Sickle Cell Society of India organised an awareness and cultural programme at Rughwani Child Care Centre and Hospital, drawing participation from numerous patients and caregivers dealing with sickle cell and thalassemia disorders. The event began with a traditional lamp-lighting ceremony. Dr Vinky Rughwani, president of the society and director of the centre, presided as the chief guest, accompanied by Dr Sangeeta Rughwani and Dr Jayprakash. Addressing the gathering, Dr Rughwani underlined the urgent need for mandatory premarital screening to curb the spread of sickle cell disease, which is genetically transmitted and prevalent in tribal and rural belts of central India. He also stressed the importance of adherence to regular treatment, including Folic Acid and Hydroxyurea, for effective disease management. He informed that the centre offers free blood transfusions, consultations, and essential medicines to needy patients, and appealed to the government to intensify its preventive and outreach initiatives. The programme also featured a cultural segment, where children affected by the disorders recited poems and performed dances. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like Esse novo alarme com câmera é quase gratuito em Casca (consulte o preço) Alarmes Undo A special yoga session, conducted by certified instructor Pranoti Bagde, saw enthusiastic participation from young patients. The event concluded with a vote of thanks by Dr Jayprakash, who acknowledged the contributions of volunteers and team members including Sandeep, Aniket, Karan Singh, and Vilas, for ensuring the smooth conduct of the programme. The event not only spread awareness about the disorder but also served as a platform to inspire positivity, resilience, and solidarity among patients and their families.
Wales Online
20-06-2025
- Health
- Wales Online
Jourdan Dunn donates blood and calls for more black heritage donors
Jourdan Dunn donates blood and calls for more black heritage donors Dunn, known for appearing on the catwalks of London, Paris and New York, attended the capital's newest blood donation centre in Brixton, south London, to mark World Sickle Cell Day. Jourdan Dunn (Image: Charlotte Tilbury ) Model Jourdan Dunn has highlighted the need for more black heritage donors to come forward to give blood – as she provided a blood donation herself. Dunn, known for appearing on the catwalks of London, Paris and New York, attended the capital's newest blood donation centre in Brixton, south London, to mark World Sickle Cell Day. Dunn's teenage son Riley is one of the country's 13,000 sickle cell patients who rely on blood transfusions from black heritage donors so they can live with the condition. Sickle cell is the country's fastest-growing inherited blood disorder that disproportionately affects black African and black Caribbean communities, according to the NHS. Around 250 babies are born with the condition in the UK each year. The service currently needs to recruit 16,000 new black heritage blood donors this year to meet the growing need. Article continues below Regular blood transfusions form the first line of defence against the condition, with patients responding best to donations containing the Ro blood type, which is significantly more prevalent in donors of black heritage. More than half (56%) of donors of black heritage are likely to have the Ro blood type, compared with just 2.4% of other ethnicities. Dunn, 34, said: "As a mother who has seen her child battle sickle cell, I am committed to doing all I can to help him, and the thousands of other people with the condition, have the best chance to live a full and healthy life. "That's why I've come to Brixton to give blood and ask the black community to register to do the same. "By giving an hour of your time three to four times a year, you can save up to 12 lives – that's an amazing power you have in your hands. "I'm incredibly thankful to the record numbers of black donors who have given blood in Brixton and across the country, but as numbers of sickle cell patients increase, so too does the need for more donors to come forward. NHS Blood and Transplant (NHSBT) director of donor experience Mark Chambers said: "We've seen a great response to our calls for more black heritage donors to sign up to become blood donors, but the need for more to register and become regular blood donors is growing. "Blood transfusions to pre-empt sickle cell crises are helping more people live well with the condition, but on average we need 250 donations a year to help them, that's why it's vitally important we recruit more black heritage donors. "Jourdan's support, both as an NHS ambassador and a donor, will hopefully encourage others to follow her lead and spare an hour of their time to make a lifesaving difference." Sickle cell patient Calvin Campbell said: "I owe my life to the generosity of black heritage donors. "Every four weeks I need to have 10 to 12 units of blood transfused into my body to allow me to be relatively healthy. "Without those blood donations I would have died years ago and not have the life I have now. Article continues below "I wouldn't have had children, grandchildren, and the ability to work." Those wanting to donate blood can register via the NHSBT app, visit or call 0300 123 23 23.
Time of India
20-06-2025
- Entertainment
- Time of India
‘Tu jiye hazaaron saal': President Droupadi Murmu moved to tears as differently-abled students sing birthday song for her during Dehradun visit; watch video
President Droupadi Murmu was moved by a birthday song from visually impaired students during her Uttarakhand visit. She is set to inaugurate a public park and open Rashtrapati Niketan and Tapovan to the public. NEW DELHI: President Droupadi Murmu was visibly emotional on Friday as students of the National Institute for the Empowerment of Persons with Visual Disabilities sang a heartfelt rendition of 'Baar baar din yeh aaye, baar baar dil yeh gaaye, tu jiye hazaaron saal, yeh meri hai aarzoo' to wish her on her birthday. A video of the moment shows the President listening intently as the children, many of them with visual impairments, sang the iconic song in unison, filling the hall with warmth and applause. The touching gesture came during her ongoing three-day visit to Uttarakhand, which began on Thursday. Governor Lt General Gurmit Singh (Retd.) and Chief Minister Pushkar Singh Dhami had received her at Dehradun's Jolly Grant Airport. During her visit, President Murmu is scheduled to lay the foundation stone of a state-of-the-art public park spread across 132 acres on Rajpur Road. The park, officials said, will be completed within a year and opened to the public. In another key highlight, Rashtrapati Niketan — earlier known as Rashtrapati Ashiyana — will be thrown open to the public from June 24. The 24-acre heritage site features artefact displays, water bodies like Lily Talab and Rokari Talab, and a rose garden. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like Memperdagangkan CFD Emas dengan salah satu spread terendah? IC Markets Mendaftar Undo Additionally, Rashtrapati Tapovan, a 19-acre serene retreat with wooden bridges and meditation spots, will also be dedicated to the public. Meanwhile, President Murmu's scheduled visit to Madhya Pradesh on June 18–19 has been cancelled. She was slated to attend a state-level event marking World Sickle Cell Day in Barwani district. The Indore Collector confirmed the cancellation on social media, citing changes in her itinerary.
The Hindu
20-06-2025
- Health
- The Hindu
Sickle Cell patients growing in tribal pockets of undivided Visakhapatnam district, says expert
Sickle Cell Disease is prevalent among the tribal people, particularly those living in the Agency areas of Alluri Sitharama Raju district, according to Paripandla Sridevi, an Associate Professor in the Central Tribal University, Vizianagaram. An estimated 1% of the total population has SCD, and 4% are carriers of the sickle cell trait, Prof. Sridevi said on the eve of World Sickle Cell Day, which is observed on June 19 every year. Prof. Sridevi has been conducting research in the tribal areas of the undivided Visakhapatnam district in the North Andhra region, for the past three years. The research is being conducted as part of the ICMR–National Task Force Project, which has been going on for the past seven years. The SCD is caused by sickle cell gene, a defective one which looks like a sickle. People affected with the disease are born with two sickle cell genes—one from each parent. Those born with one sickle cell gene, called sickle cell trait, are generally healthy, but they can pass on the defective gene to their children, she said. 'Initially, Prof. Sudhakar of the Department of Human Genetics, Andhra University, has worked on the project. Then I worked on the same project in Madhya Pradesh. I have been working on the project for the past three years at Gannela, Madagada and Paderu of ASR district,' Prof. Sridevi told The Hindu. 'I have noticed that SCD patients are unable to get blood transfusions and hydroxyurea on time due to poor amenities in the tribal areas. Stigma is attached to the disease as many tribal people think it is a curse. Some others dismiss it as common anaemia. We train ASHA workers to create awareness among the tribals on the need to opt for timely treatment for SCD and to dispel the myths,' she said. Prof. Sridevi said such research projects act as a bridge between the tribal people and the government as they bring the issues to the notice of the authorities concerned. 'We want the treatment facilities of SCD to be improved. We counsel tribal people about the dangers associated with marriages between close relations, a common practice in the Agency areas,' she said. Quoting from data provided by ASR district DM&HO Dr. Jamal Basha, Prof. Sridevi said that 4,10,380 have been screened for sickle cell anaemia in the undivided Visakhapatnam district as on June 18. Among them, 1,488 were identified as SCD positive, 12,599 carriers and 3,80,665 were negative. The government has made arrangements for the necessary medicines and nutrition for the patients with the goal completely eradicating SCD in Andhra Pradesh by 2047.
