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Has hemophilia affected you or a loved one? You are not alone. Hemophilia is a rare bleeding disorder that affects people all over the world. This condition reduces the blood’s ability to clot, which can lead to bleeding that is difficult to stop. Although there is no cure for this condition yet, however, its symptoms can be managed with the right treatment, and reduce the risk of further complications. There are different strategies for managing hemophilia, including on demand therapy, prophylaxis, physiotherapy, pain management, and adjuvant supportive care. With the right approach, people with hemophilia can lead healthy, active life.
Managing haemophilia entails a variety of strategies for managing and preventing bleeding episodes and reducing pain.
On-Demand therapy: The main treatment for bleeding episodes in patients with severe hemophilia is prompt clotting factor replacement therapy and rehabilitation. However, different types of bleeds and bleeding at particular anatomical sites may require more specific management with additional measures. It is important to consult the appropriate specialists for the management of bleeds related to specific sites.
One of the strategies is prophylaxis, which involves administering clotting factor replacement therapy on a regular basis to help prevent bleeding, to prevent musculoskeletal complications from recurrent joint and muscle bleeds. This therapy can be administered in a variety of ways, including injection into a vein, or under the skin.
Physical therapy is an important part of haemophilia management. Physical activity should be encouraged to promote physical fitness and normal neuromuscular development, with attention paid to muscle strengthening, coordination, general fitness, physical functioning, healthy body weight, and self-esteem. Non-contact sports such as swimming, walking, golf, badminton, archery, cycling, rowing, sailing, and table tennis should be encouraged.
Pain management is an important aspect of living with haemophilia. Patients suffering from this condition frequently experience long-term pain as a result of joint damage and bleeding. There are various ways to manage this pain, including medication, opioids, and non-drug methods. Physical therapy, acupuncture, and massage therapy are examples of such treatments. However, it is critical to consult with a healthcare professional to determine the best pain management strategy.
Psychosocial issues: Severe hemophilia is associated with major psychological and economic burdens for people with hemophilia and their caregivers. As hemophilia can impact many aspects of daily living and family life, psychological and social support are important components of comprehensive care for hemophilia.
Along with the various strategies, there are some important measures people with haemophilia can take to avoid bleeding episodes. This includes avoiding activities that could result in injury or bleeding, such as contact sports and heavy lifting. It is also critical to take care of your teeth and gums. You can accomplish this by practising good oral hygiene, such as brushing gently with a soft toothbrush and flossing carefully to avoid causing your gums to bleed. People with haemophilia can help manage their condition and stay healthy by taking these precautions to prevent bleeding.
Managing hemophilia is a team effort. Patients should work closely with their healthcare team to come up with a management plan that’s right for them. This plan might include different things like prophylaxis, physical therapy, pain management, and strategies for preventing bleeding. Though haemophilia is a serious disorder that needs constant management, people with it can minimise bleeding episodes and lead healthy, active lives with the help of the right management strategy.
The author is an Assistant Professor, Dept. of Clinical Hematology, Nizam’s Institute of Medical Sciences, Hyderabad. Views are personal.
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