Haemophilia, a genetic disorder where blood doesn’t clot properly, often passes from parents to children. It occurs when certain clotting factors are missing or don’t work correctly, leading to uncontrolled bleeding after injuries—or even without any clear cause.
India has the second-highest number of people with haemophilia globally. While diagnosed cases are rare—0.9 per 100,000—a study estimates around 136,000 people in India may have the condition. Many remain undiagnosed due to low awareness and limited access to proper labs, especially outside major cities.
When discussing haemophilia, focus often centers on joint damage caused by repeated bleeding. However, another serious effect is often overlooked: vision loss. Bleeding inside the eyes can happen suddenly and without warning, leading to permanent blindness if not treated quickly.
A study at an Indian government hospital found that 13% of all bleeds in haemophilia patients affected their eyes. Types of bleeding included issues like blood pooling in the eye’s front chamber or bruising around it. In severe cases, this can cause vision loss. One man lost his sight after a sudden headache caused bleeding inside his eye.
Diagnosing eye-related bleeding is challenging because symptoms are vague and treatment must be swift. Many undiagnosed patients end up in emergencies during surgery or after injuries, where blood tests may not detect clotting issues in time.
Complicating matters, about a third of haemophilia cases have no family history, and mild forms often go unnoticed until adulthood. For eye surgeries, doctors recommend checking clotting levels to prevent bleeding, but this is difficult if the diagnosis is missed or clotting factors are unavailable.
To fix this, pre-operative checklists should ask about signs of haemophilia like easy bruising or heavy bleeding after minor injuries. Tests should be done when eye bleeding seems out of proportion to the injury. Stronger ties between eye units and haemophilia treatment centers can also help.
While joint damage may improve with treatment, vision loss is irreversible. Closing India’s diagnosis gap is crucial to protect people from losing their sight.