Living well with haemophilia: Comprehensive fitness regimen and joint protection tips for patients to stay healthy

Haemophilia patients are prone to spontaneous bleeding in any part of the body but they are especially prone to bleeding in the joints. This leads to severe pain and crippling deformities if not treated promptly and correctly.

In an interview with HT, Dr Kannan Subramanian, consultant hematologist at Sahyadri Speciality Hospital in Pune’s Deccan Gymkhana, explained, “Haemophilia, is genetic condition that impairs the body’s ability to make blood clots. Maintaining a healthy lifestyle is essential for individuals with haemophilia to minimise the risk of bleeding episodes and to stay in the best physical condition possible. With a well-structured health regimen, individuals with haemophilia can lead active and fulfilling lives.”

Proactive Haemophilia Care:

Dr Farah Jijina, consultant – clinical hematology at PD Hinduja Hospital and MRC in Khar, suggested, “Ideally, all haemophilia patients should be on prophylactic factor supplements to prevent bleeds and deformities. However, this is not always possible and where this is not possible, they should be given adequate factor replacement whenever they have a bleeding episode.”

Besides treatment with the factor concentrates, they should also have a healthy lifestyle. Dr Farah Jijina advised, “These patients should have a good exercise regime under the supervision of a haematologist, as well as a physiotherapist and an occupational therapist who is trained to see haemophilia patients. They need muscle-strengthening exercises to preserve joint function. Though they should avoid contact sports, which can lead to bleeding, they should be encouraged to take part in other sports, such as swimming, cycling, tennis, badminton etc. This helps them to keep their joints and muscles healthy.”

Asserting that oral health is very important for haemophilia patients, Dr Farah Jijina said, “A lot of times, patients and their families feel that because they are prone to bleeding, especially in the gums, they tend to avoid brushing. This leads to very poor dental hygiene, which increases the risk of bleeding. Therefore, we educate all our patients to make sure that their dental hygiene is good and that, they brush regularly and take care of their oral hygiene. Wherever required, we give them vitamin D and calcium supplements to improve their bone health.”

Dr Kannan Subramanian outlined some essential strategies and practices that haemophilic patients can incorporate into their daily routines to maintain optimal health and well-being:

• Regular physical activity is important. Engaging in exercises such as swimming, walking and cycling helps enhance strength, flexibility, and cardiovascular health, benefiting overall physical well-being.
• A balanced and mix diet which rich in whole grains, lean proteins, fruits and vegetables supports optimal nutrient intake and a healthy body weight. It’s important to stay well-hydrated by consuming an adequate amount of water.
• Additionally, joint protection is critical. Individuals with haemophilia should avoid high-impact activities and employ supportive gear during physical pursuits to safeguard their joints from injuries. Practicing joint movement exercises as directed by a therapist helps in maintaining flexibility and joint health.
• To ensure optimal management of bleeding episodes, patients and their families should be educated on recognising signs of bleeds and providing prompt first aid, along with the administration of 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 haemorrhages. Regular medical monitoring and care are crucial. Scheduled check-ups with your regular doctors and physical therapists and hematologists when needed, help in the continuous monitoring of joint health, bleeding episodes and overall well-being.
• Mental health support is equally important. It’s essential to emphasize the significance of mental and emotional well-being and make counseling or support groups available for individuals and families.
• Compliance with prescribed medications is vital, including antithrombotic treatments. Individuals should adhere to medication regimens provided by doctors to maintain adequate levels of blood clotting factors, as needed.
• Staying informed about the latest advancements in haemophilia management is key. Encourage discussions with doctors regarding new treatment options, such as gene therapy, and assess the potential risks and benefits for each case.
• Finally, developing an individualised care plan in collaboration with your doctor that considers patient’s unique needs, preferences, and health status is essential. By adhering to this regimen, individuals with haemophilia can enhance their overall health, reduce the risk of bleeding episodes and maintain an optimal quality of life.