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Coping with Hemophilia: Navigating Life with a Bleeding Disorder


In addition to the physical symptoms of hemophilia, the disorder can also have a significant emotional impact


Living with hemophilia can be challenging, but with proper management and care, people with the disorder can lead full and active lives

Tarun has a condition called hemophilia, which is a rare hereditary disease that affects the body’s ability to clot blood properly. Even a minor scratch on his body can result in prolonged bleeding for hours. This is due to a deficiency or absence of specific clotting factors in the blood, leading to a tendency for excessive bleeding and bruising after surgeries or injuries. Hemophilia is caused by a genetic mutation that affects the production of clotting factors in the blood, resulting in impaired blood clotting capacity.

“The disorder is typically inherited, and those with a family history of hemophilia are more likely to be affected. Haemophilia, primarily affects males, women can also be carriers of the gene. Living with hemophilia can be challenging, as the disorder can greatly impact the person’s daily life. Many people with hemophilia experience frequent bleeding episodes, which can cause pain, swelling, and stiffness in the affected joints. This can make it difficult to perform daily activities, such as walking or climbing stairs,” says Dr Jasashwi Chakraborty (MBBS, MD, DM) Consultant Hematologist, AMRI Hospitals, Dhakuria.

Individuals with this condition may experience spontaneous bleeding into muscles and joints, as well as prolonged bleeding following injury or surgery. Other possible symptoms may include easy bruising, blood in the urine or stool, and excessive bleeding from the mouth or nose.

In addition to the physical symptoms of hemophilia, the disorder can also have a significant emotional impact. “People with hemophilia may feel isolated or misunderstood, and they may struggle with feelings of anxiety or depression. The constant need for medical treatment and monitoring can also be stressful and overwhelming,” adds Dr Chakraborty.

Fortunately, there are treatments available for hemophilia that can help manage the symptoms and prevent complications. “The primary treatment for hemophilia is replacement therapy, which involves infusing clotting factors into the bloodstream to help prevent bleeding episodes,” states Dr Chakraborty.

In addition to replacement therapy, other treatments may include physical therapy to improve joint mobility, pain management, and the use of assistive devices such as crutches or braces. “People with hemophilia may also benefit from counseling or support groups, which can help them cope with the emotional aspects of the disorder,” opines Dr Chakraborty.

Living with hemophilia can be challenging, but with proper management and care, people with the disorder can lead full and active lives. “It is important for those with hemophilia to work closely with their healthcare providers to develop a treatment plan that meets their individual needs and goals. With the right care and support, people with hemophilia can successfully manage their symptoms and enjoy a high quality of life,” signs off Dr Chakraborty.



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