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Indian hospitals note early referral to specialized care centers could spot hemophilia early before it becomes a medical emergency. In India and globally, hemophilia remains undiagnosed or undertreated.
People with hemophilia often present with symptoms that may initially seem familiar like prolonged bleeding after minor cuts or injuries, frequent bruising, nosebleeds, or bleeding after dental procedures. In children, it may show up as delayed healing or excessive bleeding after vaccinations or minor falls. However, what makes hemophilia particularly dangerous is the risk of internal bleeding that may go unnoticed until it becomes severe, said Dr Suruchi Aggarwal, associate director, diagnostics, Strand Life Sciences.
It is important to look beyond factor levels and understand the underlying biology that drives hemophilia. While factor replacement remains the cornerstone of hemophilia treatment, advances in genetics and medicine are reshaping care. Extended half-life clotting factors now remain in the bloodstream longer, meaning fewer injections is needed, which is a major improvement in convenience and quality of life, she added.
In addition, non-factor therapies help the body form clots through alternative pathways and are particularly useful for patients who develop inhibitors. Perhaps, the most promising development is gene therapy, while still evolving and not yet widely accessible, these innovations offer real hope for the future of hemophilia care.
Understanding the genetics, the variability in symptoms, and the experience of patients helps us improve diagnosis, treatment, and care for families everywhere, she said.
The genetic bleeding disorder in which the blood does not clot properly is because it lacks enough of key clotting proteins. The most common forms of hemophilia are hemophilia A due to deficiency of factor VIII and hemophilia B due to deficiency of factor IX, said Dr Aggarwal.
The hidden risks, beyond external bleeding into joints and muscles is chronic pain and disability over time. But the most serious and life-threatening complication is intracranial. In India, data from national registries and clinical cohorts indicate that a significant proportion of hemophilia-related fatality is linked to such internal bleeds, especially in individuals with severe disease who are not on preventive therapy. The mortality rates are up to 20% if once such a bleed occurs in a lifetime, she stated.
This risk is amplified by delayed diagnosis, which remains common in India. Therefore the greater awareness among clinicians and families about early symptoms, better access to coagulation and factor testing, early referral to specialized care centers, increased focus on genetic counseling and family screening, shift towards preventive care can avoid life-threatening complications.
The good news is that hemophilia is treatable, The main goal of treatment is to replace the missing clotting factor so the blood can clot properly. Standard treatment involves giving factor VIII for hemophilia A or factor IX for hemophilia B through an intravenous injection, said Dr Aggarwal.
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