Latest news with #WorldSickleCellAwarenessDay
Business Upturn
10 hours ago
- Health
- Business Upturn
ImpactLife shares highlights from World Sickle Cell Disease Awareness Day event
Davenport, Iowa, June 20, 2025 (GLOBE NEWSWIRE) — ImpactLife hosted a special event at its Davenport, Iowa headquarters to recognize World Sickle Cell Disease Awareness Day as part of local celebrations of the Juneteenth federal holiday. The Juneteenth holiday — commemorating the emancipation of enslaved people in the United States — is also recognized as World Sickle Cell Awareness Day with the goal to increase public knowledge of sickle cell disease and the challenges experienced by patients and caregivers. Community members and blood center employees gathered on Thursday, June 19, to learn about the importance of blood transfusions in providing supportive care for sickle cell patients and to hear personal experiences from those who live with sickle cell disease, or who have lost loved ones to the genetically inherited blood disorder. Speakers included Beleta Rush, who shared writings and experiences from the lives of her two daughters, Lynn and Bobbie. View and download video clips from the event, below, or on the ImpactLife web site. Dr. Meredith Parsons, Clinical Assistant Professor of Pathology from University of Iowa, provided an overview on sickle cell disease, how it affects patients, and the importance of having appropriately matched units of blood available for patients who are likely to receive multiple rounds of blood transfusions throughout their lives. Shyneeta Rush, Supervisor, Donor Services, described the blood center's Red4Life program and efforts by the blood center to identify donors who are an appropriate match for sickle cell disease patients. Cheryl Easley, of the ImpactLife donor scheduling team, helped organize the event, and recognized sickle cell 'Warriors In Battle' as well as 'Winged Warriors,' who have passed after living with the disease throughout their lives. Lamour Bluitt has two sisters living with sickle cell disease, and has authored a book on their experiences, A Child Born with Sickle Cell: the Untold Secret. About Sickle Cell Disease Sickle dell disease is an inherited blood disorder that affects red blood cells. It is the most common hereditary disorder and currently affects more than 100,000 Americans, predominantly people of African descent. The red blood cells in patients with sickle cell disease can become 'sickled' in shape, which can cause the cells to become stuck in small blood vessels. Patients can experience pain and anemia and are at increased risk for strokes and other types of organ damage. When patients experience a sickle cell crisis, red cell transfusion is a major form of therapy to relieve symptoms. Patients with sickle cell disease frequently receive transfusions of red blood cells to help treat symptoms of a sickle cell crisis. But finding appropriately matched units for sickle cell disease patients is a challenge for blood providers. With more frequent blood transfusions, patients with sickle cell disease can develop antibodies that are directed against red blood cell antigens. This process, called alloimmunization, makes it important for patients to receive antigen-negative blood types that are more generally found in donors of African descent. To help increase the diversity of the blood center's donor base, ImpactLife has created a donor program called Red4Life. Under Red4Life, the blood center identifies and recruits donors who may be an appropriate antigen match for patients with sickle cell disease. These donors are then invited to join the Red4Life program and receive special donor rewards and additional points to use in the ImpactLife Donor Loyalty Store. (Learn more at About ImpactLife ImpactLife's mission is to save lives by engaging donors, supporting partners, and advancing medicine. Founded in 1974, ImpactLife supplies blood products and services to hundreds of hospitals, emergency services organizations, clinical researchers, and other blood centers throughout Iowa, Illinois, Wisconsin, and Missouri. The nonprofit blood provider is ranked among the leading 12 blood suppliers in the United States. For more information on current blood inventory levels, our donor promotions, and more, see and find us @impactlifeblood on Facebook, X, Instagram, Threads, YouTube, and LinkedIn. Attachments Beleta Rush ImpactLife – World Sickle Cell Disease Awareness Day group photo Disclaimer: The above press release comes to you under an arrangement with GlobeNewswire. Business Upturn takes no editorial responsibility for the same. Ahmedabad Plane Crash
Time of India
2 days ago
- Health
- Time of India
City AIIMS to get CoE status for research on sickle cell anaemia
1 2 Bhubaneswar: AIIMS Bhubaneswar is set to be accorded the status of Centre of Excellence (CoE) for management and research of sickle cell disease (SCD), announced Union tribal affairs minister Jual Oram during the World Sickle Cell Awareness Day celebration at AIIMS Bhubaneswar on Thursday. "The Centre of Excellence tag will further strengthen AIIMS Bhubaneswar's capabilities in advanced research and quality treatment in sickle cell disease," said Oram. He said the govt is committed to eradicating sickle cell anaemia by 2047. "So far, 5.79 crore people were screened across the country. Among them, 5.55 crore tested negative, 16.38 lakh were identified as carriers, and 2.1 lakh were diagnosed with the disease," he added. AIIMS Bhubaneswar currently treats more than 700 registered SCD patients, over 500 of whom are in the 0 to 19 age group. "The institute offers regular diagnostic services, treatment, and carrier screening, including for extended family members of affected persons," said AIIMS Bhubaneswar executive director Dr Ashutosh Biswas. He said the institute also provides pre-natal diagnostic services to detect conditions like Down syndrome, neural tube defects, thalassaemia, and sickle cell anaemia within the first 20 weeks of pregnancy. "If both parents are carriers, there is a 25 per cent chance that the child may be affected," he added. During this visit, Oram toured various facilities of the institute and interacted with SCD patients and their family members. He also participated in a review meeting and a scientific session focused on sickle cell disease. "Facilities at AIIMS Bhubaneswar also include exchange transfusion for patients experiencing stroke or undergoing major surgeries. Furthermore, newborn screening for genetic metabolic disorders such as congenital hypothyroidism and congenital adrenal hyperplasia is actively being carried out," said the national institute in an official statement. Bhubaneswar: AIIMS Bhubaneswar is set to be accorded the status of Centre of Excellence (CoE) for management and research of sickle cell disease (SCD), announced Union tribal affairs minister Jual Oram during the World Sickle Cell Awareness Day celebration at AIIMS Bhubaneswar on Thursday. "The Centre of Excellence tag will further strengthen AIIMS Bhubaneswar's capabilities in advanced research and quality treatment in sickle cell disease," said Oram. He said the govt is committed to eradicating sickle cell anaemia by 2047. "So far, 5.79 crore people were screened across the country. Among them, 5.55 crore tested negative, 16.38 lakh were identified as carriers, and 2.1 lakh were diagnosed with the disease," he added. AIIMS Bhubaneswar currently treats more than 700 registered SCD patients, over 500 of whom are in the 0 to 19 age group. "The institute offers regular diagnostic services, treatment, and carrier screening, including for extended family members of affected persons," said AIIMS Bhubaneswar executive director Dr Ashutosh Biswas. He said the institute also provides pre-natal diagnostic services to detect conditions like Down syndrome, neural tube defects, thalassaemia, and sickle cell anaemia within the first 20 weeks of pregnancy. "If both parents are carriers, there is a 25 per cent chance that the child may be affected," he added. During this visit, Oram toured various facilities of the institute and interacted with SCD patients and their family members. He also participated in a review meeting and a scientific session focused on sickle cell disease. "Facilities at AIIMS Bhubaneswar also include exchange transfusion for patients experiencing stroke or undergoing major surgeries. Furthermore, newborn screening for genetic metabolic disorders such as congenital hypothyroidism and congenital adrenal hyperplasia is actively being carried out," said the national institute in an official statement.
Time of India
2 days ago
- Health
- Time of India
‘Will screen all in state for sickle cell anaemia'
Ranchi: The state department of health, medical education and family welfare aims to screen Jharkhand's entire population for sickle cell anaemia within a year, health minister Irfan Ansari said on Thursday. Addressing a programme, held to observe World Sickle Cell Awareness Day at sadar hospital here, Ansari said a bone marrow transplant centre will soon be set up in the hospital to ensure affordable treatment to the patients of the state. "Jharkhand has emerged as a model for other states when it comes to testing sickle cell anaemia. The health professionals, including doctors, nurses, ANMs, and GNMs, have played a key role behind this success. The govt is committed to 100% eradication of the disease in the state," he said. Ansari said extensive tests are being carried out to detect sickle cell anaemia across all the districts in line with the Centre's National Sickle Cell Anaemia Elimination Mission 2047. Health officials and experts said the disease is prevalent in 17 districts, where tribal population dominate the demography. "Soon, we will set up a Medico City which will provide comprehensive medical care in the state. Patients will not have to travel outside for treatment," he said. Health secretary Ajoy Kumar Singh said most of the patients hail from tribal communities. "Out of 1,381 recorded sickle cell anaemia patients in Ranchi district, only 225 are undergoing treatment. We must ensure 100% testing of all population and provide medical attention to those affected by the disease," he said.
The Hindu
2 days ago
- Health
- The Hindu
All you need to know about: sickle cell disease
It's a disease that not many know about, despite estimates indicating that India carries the second-highest burden globally. Sickle cell disease, a group of inherited blood disorders, affects around 1 million people in India, a significant proportion of whom are concentrated in tribal belts across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra. June 19 is observed as World Sickle Cell Awareness Day and this year's theme is: 'Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy.' Here is all you need to know about sickle cell disease. What is sickle cell disease? Sickle cell disease refers to a group of inherited blood disorders. A genetic mutation causes the body to produce abnormal haemoglobin. Haemoglobin is a protein containing iron, found in the body's red blood cells. It plays a crucial role in transporting oxygen from the lungs to the rest of the body. In patients with sickle cell disease, the abnormal haemoglobin causes the shape of the red blood cells to change. Healthy red blood cells are round, and can easily move throughout the body, delivering oxygen. In sickle cell disease, the red blood cells are shaped like a sickle (hence the name) or a crescent, and become rigid and sticky. The sickle cells can slow or block blood flow, hampering the delivery of oxygen to organs and tissues, causing pain and other complications. In addition, sickle red blood cells are more fragile than normal red blood cells: they last only 10 to 20 days as opposed to 90 to 120 days that the normal red blood cells last, which means the body may have a lower number of red blood cells -- anaemia. How does it occur? Sickle cell disease is inherited. When both parents have a copy of the sickle cell gene and the child inherits both copies, then the child gets sickle cell disease. If the child inherits only one copy of the sickle cell gene, the child has sickle cell trait -- this means that there is one normal haemoglobin gene and one sickle cell gene. These children generally do not have symptoms, but are carriers, and can pass on the gene to their children. Sickle cell disease is an umbrella term; sickle cell anaemia refers to a type of sickle cell disease, a common and severe form. A 2024 analysis, 'Prevalence of Sickle cell disease, Sickle cell trait and HBS-beta-thalassemia in India: A systematic review and Meta-analysis' by Priyanka Rao et al, estimated the prevalence of sickle cell disease (SCD) and sickle cell trait (SCT) to be 1.17% and 5.9% in India. Madhya Pradesh, Chhattisgarh, and Maharashtra have a high prevalence of SCD and SCT, with the burden relatively higher among the tribal communities, the analysis said. What are the signs and symptoms? Signs of sickle cell disease usually manifest from early childhood. Signs and symptoms vary from person to person and may range from mild to serious. Some symptoms include: anaemia, which can cause tiredness and shortness of breath and weakness; periodic episodes of pain, known as pain crises, which occur when blood flow is blocked, often to the chest arms of legs; swelling of hands and feet caused by blocked blood circulation; yellowing of the skin and eyes (jaundice); delayed growth and a frequent infections. What are the complications of sickle cell disease? There are a number of complications that can arise with this disease. These include: acute chest syndrome, which occurs when oxygen flow to the lungs is blocked and can be a medical emergency; stroke, when there is an interruption to blood flow to the brain; splenic sequestration or splenic pooling, when sickle cells get stuck in the spleen, causing it to enlarge and leading to a sudden drop in the number of circulating red blood cells and priapism, when sickle cells block blood vessels in the penis causing pain and potentially permanent damage. How is sickle cell disease treated? Treatment of sickle cell disease usually involves the management of symptoms and the prevention of complications. A bone marrow (stem cells transplant) can cure the disease. This involves replacing the bone marrow of the patient with bone marrow from a healthy, genetically matched donor. However there are risks involved, the procedure may not be suitable for all, and it is expensive. Other treatments involve the use of medications to help lessen pain crises, lower the risk of anaemia and improve blood flow. One significant drug used in treatment is hydroxyurea. Pain relieving medications may also be prescribed. Some patients may require blood transfusions to increase the number of healthy red blood cells in their body and prevent symptoms and complications. Antibiotics may be prescribed to prevent infections. Recently, gene editing therapy for sickle cell disease has become possible. In December 2023, the United States' Food and Drug Administration (FDA) approved of two treatments: Casgevy and Lyfgenia, 'representing the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older. Additionally, one of these therapies, Casgevy, is the first FDA-approved treatment to utilise a type of novel genome editing technology, signaling an innovative advancement in the field of gene therapy,' as per its website. In May 2024, a 12-year-boy in the U.S. became the world's first patient to receive gene therapy, which involved the removal of his bone marrow cells, their genetic tweaking and then their replacement in his body. What is India's response to the sickle cell challenge? In 2023, the Centre launched the National Sickle Cell Anaemia Elimination Mission to eliminate sickle cell disease as a public health problem by 2047. The overall aim of the mission, as per its website, is to enable access to affordable and quality health care to all SCD patients, and to lower the prevalence through awareness, change of practices and screening interventions. The initial focus is to be on 17 high prevalence States. However access to drugs and treatment continue to remain major challenges for a large number of patients in India.
Time of India
3 days ago
- Health
- Time of India
Daga Hospital Leads Sickle Cell Fight, Treats 1,500+ Patients, Screens 10,000 Women
Nagpur: Daga Memorial Women's Hospital, under the state public health department, is at the forefront of combating sickle cell anaemia, a genetic blood disorder, aligning with the National Sickle Cell Anaemia Elimination Mission 2047. Tired of too many ads? go ad free now The hospital registered over 1,500 patients who receive regular treatment, including hydroxyurea, and screens approximately 10,000 pregnant women annually, with 5% identified as carriers of the sickle cell trait. World Sickle Cell Awareness Day, observed on June 19, holds special significance in India, particularly in high-burden regions like Nagpur. This year's theme, 'Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy', underscores the importance of community-driven efforts. Daga Hospital medical superintendent Dr Dilip Madhavi said the screening is critical for early diagnosis. "Every pregnant woman registered at the hospital undergoes mandatory sickle cell testing. With around 1,000 women screened monthly, the hospital identifies carriers to prevent the disease's transmission," he said. Civil surgeon Dr Nivrutti Rathod said soon a centre for genetic testing, including amniocentesis (a prenatal test) and chorionic villus sampling (CVS), would be set up at Daga to further enhance prenatal screening. Dr Sanjay Deshmukh, in-charge of haematology centre at Daga Hospital, said sickle cell disease (SCD) involves inherited disorders affecting haemoglobin, leading to sickle-shaped red blood cells. These cause severe pain, anaemia, and heightened infection risks, significantly impacting patients' quality of life. For severe cases, bone marrow transplant remains primary treatment but is prohibitively expensive, costing up to ₹30 lakh, he said. Tired of too many ads? go ad free now Dr Deshmukh said through CSR funding from Western Coalfields Limited (WCL) and support from Sankalp Foundation, children under 12 eligible for transplants receive up to ₹12 lakh financial aid. He added that Daga Hospital will soon host a free HLA typing camp, a prerequisite for bone marrow transplants, in collaboration with Sankalp Foundation. Besides Dr Deshmukh, the Daga team includes counsellors Sanjeevani Satpute and Leena Borkar, and lab technicians Prachiti Walke and Rohit Jaiswal. Meanwhile, Gautam Dongre, secretary of the National Alliance of Sickle Cell Organizations (Nasco), urged mandatory sickle cell testing before marriage to prevent the pain and loss caused by the hereditary blood disorder. Sharing his experience as a parent unaware of his carrier status until his child's diagnosis, Dongre emphasised that timely testing and counselling could spare families immense suffering. He called for blood tests during pregnancy to ensure a sickle cell-free India for future generations.
