Latest news with #SCD
Time of India
a day ago
- Health
- Time of India
Shefali Jariwala's death sparks concern: Why are more women dying suddenly of heart issues?
The sudden demise of Indian television personality and actress Shefali Jariwala has sent shockwaves across the nation. While the official cause of death awaits confirmation pending a post-mortem and forensic analysis, preliminary reports suggest a cardiac arrest, a growing and concerning phenomenon affecting seemingly healthy, middle-aged women. A growing, understudied crisis: Sudden cardiac death or SCD has long been considered a rare event among young adults. However, its rising prevalence, particularly in India, is drawing critical attention from the medical community. Cardiovascular diseases currently account for approximately 28% of all deaths in the country, with nearly 10% of these linked to sudden cardiac death. Alarmingly, a significant proportion of these fatalities occur in individuals aged 30 to 50. India's ongoing socioeconomic transformation has introduced widespread lifestyle changes sedentary behavior, processed diets, tobacco use, and rising stress levels fueling a surge in hypertension, obesity, diabetes, and coronary artery disease, all key contributors to SCD. While historically more prevalent among men, recent studies underscore the unique and often overlooked risks faced by women. Unlike men, women who experience SCD frequently have no prior cardiac diagnoses. Structural abnormalities such as myocardial scarring and ischemic heart disease often go undetected during life, only being identified in post-mortem examinations. Even more concerning is that many women do not exhibit classical warning signs such as chest pain or ECG anomalies, making early detection a formidable challenge. The silent threat in midlife women Women in their 40s and 50s like Shefali face a silent but serious risk from underlying cardiac conditions. In younger populations, SCD is frequently associated with inherited or electrical disorders such as Hypertrophic Cardiomyopathy, Arrhythmogenic Right Ventricular Cardiomyopathy, Long QT Syndrome, Brugada Syndrome, and Catecholaminergic Polymorphic Ventricular Tachycardia. These conditions often show no symptoms until a fatal arrhythmia occurs. In this age group, additional factors such as left ventricular hypertrophy, obesity, and myocardial fibrosis increase vulnerability. The progression of myocardial scarring and fibrosis with age can be attributed to cumulative exposure to cardiovascular risks, repeated micro-ischemic events, and hormonal changes, particularly during the perimenopausal years. Moreover, conditions like Myocardial Infarction with Non-Obstructive Coronary Arteries (MINOCA), more prevalent in younger women—often leave no trace in autopsies, making diagnosis even more elusive. Stress formed a major part of Shefali's journey, who started as a teen star. Takutsobo cardiomyopathy (Broken Heart Syndrome) or Stress induced Cardiomyopathy is also a major cause of SCD in women who multitask and emotionally stressed. Shefali also had her personal struggles due to her divorce, with anxiety, depression and epilepsy—both of which may intersect with cardiovascular health. Psychiatric medications, particularly those that prolong the QT interval, have also been linked to heightened SCD risk. A call for gender-specific prevention and awareness Despite the gravity of the issue, women remain underrepresented in preventive heart care. Symptoms such as fatigue, palpitations, or breathlessness are often dismissed or misattributed, delaying crucial intervention. In contrast to heart attacks—caused by blocked arteries—cardiac arrest results from electrical disturbances that cause the heart to stop suddenly. Immediate CPR and defibrillation are often the only lifesaving measures, underscoring the need for early risk identification. As medical experts we are now urging for more targeted public health strategies. We need to enhance early screening tools tailored to women, particularly during perimenopause when cardiac risks surge. Honoring a star, fueling a movement As the entertainment industry and fans mourn the loss of Shefali Jariwala, her tragic passing serves as more than a moment of grief—it is a rallying cry. Her death shines a spotlight on an overlooked health crisis and the urgent need for systemic change in how women's heart health is addressed. Shefali was a star who captivated audiences with her screen presence. But in the wake of her untimely demise, she may well be remembered as a symbol of awareness, a reminder that the heart's silence can be fatal, and that women's cardiac health demands immediate attention, investment, and action. Dr. Sarita Rao, MD, DM, FACC, FSCAI, Senior Interventional Cardiologist & Director Cathlab, Apollo Hospitals, Indore President, WINCARS Association, Co-chair, EAPCI International Affairs, SCAI International Board member, WIN-APSIC Board member
Hindustan Times
4 days ago
- Health
- Hindustan Times
Living with Sickle Cell: What It Takes to Thrive, Not Just Survive
The Daily Toll Beyond the Crisis: A Life Shaped by Sickle Cell Disease Sickle cell disease is a chronic genetic disorder that affects the shape and behavior of red blood cells. These cells become sickle-shaped, stiff, and sticky, causing them to block blood flow and prevents oxygen from reaching tissues. This leads to what are known as 'pain crises'—sudden, severe episodes that can last hours or even days. But these crises are only part of the burden. Even on stable days, people with SCD live with a range of complications: chronic anaemia, joint pain, slowed growth, shortness of breath, and fatigue that never quite lifts. Over time, nearly every organ in the body can be affected—stroke, kidney and liver dysfunction, vision problems, and frequent infections are not uncommon. 'Sickle cell disease is a condition that begins early and lasts for life,' explains Dr. Lakhan Poswal, a pediatric doctor, now at Ajmer Medical College. 'Most children with SCD suffer from severe anaemia, which stunts growth and weight gain. Until recently, public awareness was virtually nonexistent here. But since 2021–22, when we set up the Centre, we've gone from treating five patients to over 500.' Dr. Poswal describes the spleen the body's immune stronghold as one of the first organs impacted. Repeated blood flow blockages damage the spleen early on, rendering it non-functional. That leaves patients much more vulnerable to serious infections like pneumonia, meningitis, and gall bladder disease.' Toward Equitable and Inclusive Care Even basic interventions—like proper hydration, timely medication, and routine check-ups—can significantly improve the quality of life for individuals with sickle cell disease. Recognising this, the Government of India has taken several steps to strengthen access to care, especially in rural and tribal regions. Initiatives such as free hydroxyurea and folic acid distribution through public health centres, increased funding for primary healthcare infrastructure, and community awareness campaigns are helping bridge long-standing gaps. The inclusion of sickle cell screening under national health missions and the involvement of ASHAs and ANMs in patient follow-ups reflect a growing commitment to early detection and continuous care. While challenges such as medicine availability and local capacity persist, collaborative efforts between central and state governments, along with public health institutions, are steadily transforming the care landscape toward a more inclusive and consistent system. Children miss school. Adults miss work. Families learn to live around hospital visits and flare-ups. 'It takes extraordinary discipline to manage this disease,' says Dr. Poswal. 'Even a skipped meal or a short walk on a hot day can trigger a crisis.' For patients, staying hydrated, well-nourished, warm during winter, and free of infection becomes a full-time job. The disease forces them into hyper-awareness, while most others live in blissful oblivion. Stories Beyond the Stats But numbers alone can't tell the whole story. Every patient is a face, a voice, a story of resilience. Many are children trying to navigate friendships with chronic fatigue. Teenagers who are delayed in puberty. Adults who've been turned away from jobs or face stigma from peers and partners. Caregivers, too—especially parents—speak of exhaustion, worry, and helplessness. It isn't just the medical care; it's the day-to-day emotional labor that wears them down. And yet, amid the silence, there's growing momentum. India's Turning Point With the launch of the National Sickle Cell Anaemia Elimination Mission in 2023 by Prime Minister Narendra Modi, India has made a public commitment to bring the disease out of the shadows. The mission targets the screening of over 7 crore individuals across 17 states in 3 years, making it one of the most ambitious efforts globally to eliminate SCD as a public health issue by Screening initiatives have begun reaching schools and communities. Health workers are being trained to identify symptoms and counsel families. Access to hydroxyurea is improving in parts of the country. And Centres of Excellence, like the one in Udaipur, are showing what's possible when care is consistent. 'There is a big difference now,' says Dr. Poswal. 'Earlier, people didn't know this disease even existed. Now, more are coming forward to get tested, to seek treatment, and to speak about it.' A Global Ray of Hope Many clinical trials are underway to further evaluate the effectiveness and safety of newer potential therapies for SCD. Reactivation of fetal hemoglobin, stem cell transplantation, and gene editing are newer therapies that are in the mix to potentially find a solution to SCD. For now, awareness remains the most powerful tool in India's arsenal. Non-profits are stepping in to support families, organise blood donation drives, and raise awareness. Online communities are growing, giving patients a voice and breaking stigma. More importantly, survivors themselves are beginning to speak up—no longer willing to be invisible. The Way Forward To live with sickle cell disease is to fight quietly but relentlessly. It is to manage pain others don't see and to build lives around the unpredictable. These are not stories of tragedy. These are stories of survival. But survival shouldn't be so hard. Better policies, affordable medication, and equitable access to healthcare are critical. But it all begins with awareness. And with listening. As Dr. Poswal puts it, 'We went from treating 5 patients to 500 in less than a year. That's not just numbers—it's lives changed. It's proof that when awareness meets action, progress follows.' Note: This article has been produced on behalf of the brand by HT Brand Studio and does not have the journalistic/editorial involvement of Hindustan Times. The information provided does not constitute medical advice. Please consult a registered medical practitioner for health-related concerns.
Hindustan Times
4 days ago
- Health
- Hindustan Times
Early Clues, Lifelong Impact: Understanding Sickle Cell DiseaseUntitled Story
Sickle Cell Disease (SCD) is one of India's persistent public health concerns. It is a genetic blood disorder that alters the shape and function of red blood cells. These cells become sickle-shaped, stiff, and sticky, causing them to block blood flow. This can result in a range of complications, from pain crisis, extreme fatigue, infections, delayed growth, and organ damage. India faces 1.4 million SCD cases, with 20 million carriers nationwide SCD has a significant prevalence in India, particularly in certain high-risk regions across central and eastern states. According to the Indian Council of Medical Research (ICMR), approximately 20 million individuals carry the sickle cell trait, with over 1.4 million cases of SCD reported nationwide. Early identification remains the most effective way to prevent long-term damage. Why Early Detection Matters Many babies are screened for SCD at birth in countries with strong neonatal screening programs. In India, however, awareness is still growing, and universal screening is being scaled gradually under the National Sickle Cell Anaemia Elimination Mission. Launched by Honourable Prime Minister Narendra Modi in July 2023, this mission aims to screen over 7 crore people by 2026 and eliminate the disease as a public health issue by 2047. Source: PIB – National Sickle Cell Mission, July 2023 Unfortunately, in the absence of early diagnosis, children with SCD may go undiagnosed until they experience a severe health episode. Subtle signs often mistaken for common ailments can be early indicators that something is wrong. Early Signs You Shouldn't Ignore 1. Unexplained Fatigue or Weakness Children with SCD often suffer from anaemia, resulting in chronic fatigue or breathlessness even after mild exertion. 2. Swollen Hands or Feet in Infants A condition known as "dactylitis," or painful swelling in hands and feet, can be one of the earliest signs of blocked blood flow due to sickled cells. 3. Recurring Infections The spleen, which plays a key role in fighting infections, may become damaged early in children with SCD, making them more vulnerable to fevers, pneumonia, and other bacterial infections. 4. Yellowing of the Eyes or Skin Jaundice is common in children with SCD due to the rapid breakdown of defective red blood cells. 5. Delayed Growth and Puberty Lack of healthy red blood cells can impact physical growth and hormonal development. 6. Pain Episodes or 'Pain Crises' Even without visible injury, children may complain of severe pain in the chest, abdomen, bones, or joints. These episodes can last hours or days. 'Sickle Cell Disease is not curable in all cases, but it is preventable and manageable. Early screening—especially premarital or prenatal—can significantly reduce the disease burden. And for those diagnosed, timely medical care can vastly improve quality of life,' says Dr. Dipty Jain, Former Chair, Dept of Pediatrics, Government Medical College, Nagpur, and Chairman of the Task Force on SCD Elimination. Taking Action If your child or someone in your family is showing multiple signs listed above—or if there is a family history of the disease—consult a medical professional. A simple blood test, such as the haemoglobin electrophoresis test or solubility test, can detect whether someone is a carrier or has the disease. Treatment and Management Options While there is currently no universal cure, treatment options can help manage the disease effectively: Hydroxyurea: A medication that reduces pain episodes and the need for transfusions. Vaccinations & Antibiotics: Essential to reduce infection risk, especially in young children. Routine Monitoring: Regular health checkups to monitor organ function and growth. Bone Marrow Transplant: The only known potential cure for some patients, especially children with matched donors. A National Call to Action India's National Sickle Cell Anaemia Elimination Mission is now operational in 17 states and 278 districts. As of March 2024, June 2025, over 5,79,35,688 crore individuals have been screened. The mission prioritizes awareness, outreach, and community engagement, especially in regions with higher genetic prevalence. Source: In Closing Sickle Cell Disease rarely announces itself loudly. It enters quietly, through pain episodes, fatigue, mild fevers, or a child who seems to fall ill too often. But by recognising the early signs, seeking testing, and beginning treatment, we can change the story. Every timely diagnosis is a step towards healthier, longer lives and a future free from the burden of this inherited condition. Sources: National Sickle Cell Anaemia Elimination Mission Guidelines – NHM, MoHFW Press Information Bureau: National Sickle Cell Mission Launch – July 2023 UN Resolution A/RES/63/237 – Recognition of World Sickle Cell Day PIB: Progress Update – March 2024 Note: This article has been produced on behalf of the brand by HT Brand Studio and does not have the journalistic/editorial involvement of Hindustan Times. The information provided does not constitute medical advice. Please consult a registered medical practitioner for health-related concerns.
Hans India
6 days ago
- Health
- Hans India
Newborn screening programme for sickle cell reduced death rate to below 5 pc: ICMR-CRMCH
New Delhi: Newborn screening programme for sickle cell disease (SCD), undertaken between 2019-2024, reduced mortality risk to below 5 per cent from the earlier 20 to 30 per cent, said Dr. Manisha Madkaikar, Director of ICMR- Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur. Speaking to IANS, Madkaikar explained how the Newborn Screening Programme 2019-2024 found that an early diagnosis can significantly boost the outcomes of the chronic, single-gene disorder. SCD is a chronic, single-gene disorder that causes a debilitating systemic syndrome characterised by chronic anaemia, acute painful episodes, organ infarction, and chronic organ damage, significantly reducing life expectancy. The genetic blood disorder affects the entire life of the patient, as it leads to various severe health complications. 'Newborn screening programme is recommended for sickle cell disease because as early you diagnose the sickle cell disease, you can initiate comprehensive care in the form of penicillin prophylaxis, some vitamins, appropriate vaccination, and then hydroxyurea therapy,' Madkaikar told IANS. 'Our newborn screening has shown that comprehensive care could be given early to patients, it has significantly brought down the mortality which was earlier mortality rate was reported to be around 20 to 30 per cent, this has brought down the mortality risk less than 5 per cent,' she added. In a study, conducted by the ICMR-National Institute of Immunohaematology (NIIH) in Mumbai, about 63,536 newborns were tested for a period of five years. Of the total newborns tested, 57 per cent belonged to tribal parents, while 43 per cent were from non-tribals. The yet-to-be-published study identified 546 cases of sickle cell disease. The study was led across seven centres in high prevalence areas of India, namely Udaipur (Rajasthan), Bharuch (Gujarat), Palghar, Chandrapur and Ghadchiroli (Maharashtra), Mandla and Dhindori (Madhya Pradesh), Nabrangpur and Kandhamal (Odisha), and the Nilgiris (Tamil Nadu). Centres in Gujarat reported the highest number of SCD cases (134), followed by Maharashtra (127), Odisha (126). Other centres with SCD cases include Madhya Pradesh (97), Rajasthan (41), and Tamil Nadu (21). Mortality due to SCD was identified in 22 cases (4.15 per cent), revealed the study. 'The study showed that early intervention definitely helps, it also helps in cascade screening as you identify one baby with the sickle cell disease, you counsel the family, you test the family members, and it helps in further diagnosis of existing patients as well as prevention of further birth of further the disease. So, newborn screening activity must be done for all the newborns in sickle cell prevalent areas,' Madkaikar told IANS.
The Hindu
22-06-2025
- Health
- The Hindu
Newborn screening, early treatment can cut sickle cell anaemia mortality: ICMR study
Post-birth diagnosis resulting in early treatment can substantially improve the quality of life and reduce mortality in patients with sickle cell disease to less than five per cent from the reported 20-30 per cent, according to an ICMR study. As many as 63,536 newborns were tested over a five year period from 2019- 2024 as part of the study on Newborn Screening for Sickle cell Disease conducted by the National Institute of Immunohaematology in Mumbai under the India Council of Medical Research (ICMR) across seven centres in high prevalence areas of India. The study is yet to be published. The newborn screening program helps find out if a baby is born with Sickle Cell Disease (SCD), a serious inherited blood disorder, soon after birth, explained Manisha Madkaikar, director of ICMR- Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Nagpur. "If not detected early, this disease can cause life-threatening problems like severe infections, anaemia (low blood levels), and even strokes in infants," she stressed. "Finding the disease early can save lives by allowing doctors to start treatment before problems begin," Prabhakar Kedar, Scientist F, ICMR-NIIH , who is the principal investigator of the study, said. Babies diagnosed early can be given preventive antibiotics (like penicillin) to avoid infections and get regular checkups and care from specialists, Dr Madkaikar said. Early detection also helps in getting important vaccines to protect against serious illnesses while parents can also be taught the signs of danger so they can act quickly. It also helps families and doctors plan long-term treatment, provides genetic counselling to the family, and increases awareness, reducing the number of future cases, Dr Madkaikar explained. This screening is especially important in tribal and high-risk areas of India, where many cases go undiagnosed, leading to early childhood deaths, Dr Kedar highlighted. "With screening, many of these deaths can be prevented," he said. During the study, 7,275 babies (11.4 per cent) were found to be carriers of the sickle cell gene. This means they don't have the disease but can pass it on to their children, Dr Kedar said, adding, 569 babies (0.9 per cent) were found to have SCD. These babies were followed up for the confirmation of diagnosis, parents were counselled about SCD, preventive measures to be taken for or to avoid complications, and informed about prenatal diagnosis to avoid any further births of affected children in the family. "The babies were given comprehensive care, including penicillin prophylaxis, folic acid supplementation, appropriate vaccinations and hydroxyurea therapy, as indicated. This resulted in reduction in mortality in these children to less than 5 per cent from the earlier reported mortality of 20-30 per cent," Dr Kedar said. This study shows that newborn screening works and can save lives, especially in places with a high number of cases like tribal areas, Dr Kedar said. This study was coordinated by Harpreet Kaur, senior scientists at ICMR, Delhi. "By detecting Sickle Cell Disease early, babies can get timely care, live healthier lives, and families can be better prepared," Dr Kedar said. The seven centres which participated in the study are National Institute For Implementation Research on Non-Communicable Diseases in Jodhpur, Society for Education, Welfare and Action-Rural (SEWA -Rural) in Gujarat, the Nilgiris Adivasi Welfare Association (NAWA), Tamil Nadu, ICMR- National Institute for Research in Reproductive Health in Mumbai, ICMR-National Institute of Research in Tribal Health (NIRTH) in Jabalpur, ICMR-Regional Medical Research Centre, Bhubaneswar and ICMR- Centre for Research Management and Control of Haemoglobinopathies (CRHCM) in Chandrapur. Of the total 63,536 newborns tested, 57 per cent belonged to tribal parents and rest from others, Dr Kedar informed. The aim of the study was also to understand the regional variability and role of genetic modifiers in sickle cell disease as well as to identify barriers for newborn screening implementation, he explained.
