Hemophilia patients are at risk of sudden bleeding in any part of the body, but bleeding in the joints is most likely to occur. If not treated timely and properly, it can cause severe pain and disability.
In an interview with HT, Dr Kannan Subramanian, consultant haematologist at Sahyadri Speciality Hospital, Deccan Gymkhana, Pune, explained, “Haemophilia is a genetic condition that impairs the body’s ability to form blood clots. Maintaining a healthy lifestyle is essential for persons with haemophilia to reduce the risk of bleeding and remain in the best physical condition possible. With a well-organised healthcare regime, persons with haemophilia can lead active and fulfilling lives.”
Active Hemophilia Care:
“Ideally, all haemophilia patients should take prophylactic factor supplementation to prevent bleeding and morbidity. However, this is not always possible and where it is not possible, they should be given adequate factor replacement if a bleeding event occurs,” suggested Dr Farah Jijina, consultant, clinical haematology, PD Hinduja Hospital and MRC, Khar.
Apart from treatment with factor concentrate, they should also adopt a healthy lifestyle. Dr. Farah Jijina advised, “These patients should adopt a good exercise program under the supervision of a hematologist, as well as physiotherapists and occupational therapists trained to treat hemophilia patients. They need muscle-strengthening exercises to maintain joint function. Although they should avoid contact sports that may cause bleeding, they should be encouraged to participate in other sports such as swimming, cycling, tennis, badminton, etc. This helps them keep their joints and muscles healthy.”
Dr. Farah Jijina said that oral health is very important for hemophilia patients, “Many times, patients and their families think that because they are prone to bleeding, especially in the gums, they avoid brushing. This leads to very poor dental hygiene, which increases the risk of bleeding. Therefore, we educate all our patients to ensure that they have good dental hygiene and that they brush regularly and take care of their oral hygiene. Where necessary, we give them vitamin D and calcium supplements to improve their bone health.”
Dr. Kannan Subramanian outlined some essential strategies and practices that hemophilic patients can incorporate into their daily routine to maintain optimal health and wellness:
- Regular physical activity is important. Exercises such as swimming, walking and cycling help increase strength, flexibility and cardiovascular health, which benefits overall physical health.
- A balanced and mixed diet rich in whole grains, lean proteins, fruits and vegetables helps maintain optimal nutrient intake and a healthy body weight. It is important to stay well hydrated by drinking adequate amounts of water.
- Additionally, joint protection is also important. Individuals with hemophilia should avoid high-impact activities and use supportive gear during physical activities to protect their joints from injuries. Practicing joint movement exercises as directed by a therapist helps maintain flexibility and joint health.
- To ensure optimal management of bleeding events, patients and their families should be educated on how to recognize bleeding symptoms and provide immediate first aid, as well as administer appropriate clotting factor replacement therapy when needed. Safety comes first. Encourage participation in non-injury-prone activities while avoiding high-risk sports to prevent potential bleeding. Regular medical monitoring and care is important. Scheduled checkups with your regular doctors and physiotherapists and hematologists when needed help in continuous monitoring of joint health, bleeding events, and overall well-being.
- Mental health support is equally important. Emphasising the importance of mental and emotional health and providing counselling or support groups for individuals and families is essential.
- Compliance with prescribed medications is important, including antithrombotic treatment. Individuals must adhere to the medications prescribed by doctors to maintain adequate levels of blood clotting factors as needed.
- It is important to stay informed about the latest advances in hemophilia management. Encourage discussions with doctors about new treatment options such as gene therapy and assess the potential risks and benefits for each case.
- Finally, it is essential to work with your doctor to develop an individualized care plan that considers the patient’s specific needs, preferences, and health status. By following this regimen, individuals with hemophilia can improve their overall health, reduce the risk of bleeding, and maintain an optimal quality of life.
