Managing Haemophilia: Tips for Daily Life

Feeling overwhelmed trying to balance everyday life while managing haemophilia? If so, how can you stay prepared without letting fear take over your life? For haemophilia patients, day-to-day life brings unique challenges. But the right strategies and support can help lead a full, active, and healthy life. This blog shares essential tips on how to manage haemophilia and live life with more ease and confidence.

Understanding Haemophilia

What is Haemophilia disease?

Firstly, let’s learn more about haemophilia. Haemophilia is a rare genetic bleeding disorder. Here, the proper blood clotting doesn’t occur due to the lack of certain clotting factors. Haemophilia inheritance is passed from mother to child through the X chromosome, mainly affecting males.

What are the types of haemophilia?

• Haemophilia A

• Haemophilia B

• Haemophilia C

• Acquired Haemophilia

Haemophilia can be inherited or acquired. Understanding the 'haemophilia causes' is important for early diagnosis and proper treatment planning.

What are haemophilia symptoms?

• Unexplained and frequent bruising

• Joint swelling and pain

• Muscle pain and swelling

• Blood in urine or stool

• Nosebleeds that are hard to stop

What are the complications of haemophilia?

• Joint damage (Hemarthrosis)

• Internal bleeding

• Prolonged bleeding after injury or surgery

• Inhibitors

• Emotional and mental strain

What are the Haemophilia treatments available?

• Factor Replacement Therapy

• Desmopressin (DDAVP)

• Antifibrinolytic Therapy

• Immune tolerance therapy (ITT)

Management of haemophilia

Here are some practical and helpful tips in everyday life for better management of haemophilia.

1. Stay Informed and Educated

Understanding more about haemophilia is the first step in managing it effectively. And don't forget to seek regular medical attention.

Keep a personal health diary or use a haemophilia app. The Haemophilia app allows patients and caregivers to log symptoms, monitor factor infusions, receive medication reminders, and access emergency information all in one place.

2. Build a Strong Healthcare Team

Surround yourself with a knowledgeable support system. Haemophilia treatment comes under the haematology department, and your team of specialists, including haematologists, nurses, and physiotherapists, provide you with expert care.

Having a go-to doctor is important. They will be familiar with your medical history and thus can easily manage medical emergencies. Believers Hospital, Thiruvalla, has the best doctors in Kerala for haemophilia treatment. 

3. Stick to a Treatment Schedule

For many people with haemophilia, regular prophylactic treatment is essential to prevent bleeds. It is important to follow the schedule prescribed by your doctor, even when you’re feeling well. Store medications properly and set reminders for doses. 

4. Embrace Safe Physical Activity

Exercise is vital for everyone. It is the same for people with haemophilia as well. Exercise helps build strong muscles and joints, which, in turn, reduces the risk of bleeds.

What are the low-impact activities that can be opted for?

• Swimming

• Walking

• Cycling

• Yoga

• Resistance training

These not only keep you fit but also improve joint health and balance. However, it is better to avoid doing high-impact and contact sports. Always consult your physiotherapist before starting any new fitness routine.

5. Protect Your Joints

A long-term complication of haemophilia is the joint damage caused by repeated bleeds. Avoid unnecessary strain on joints and maintain a healthy weight. And don’t forget to use protective gear like knee or elbow pads during physical activity. Treat joint bleeds promptly. Follow up with physiotherapy to restore strength and mobility. RICE (Rest, Ice, Compression, Elevation) can help manage minor injuries at home.

6. Travel, but with a bit of planning

Always carry your treatment records and medications for the trip. Don’t forget to research Haemophilia Treatment Centers near your destination. It is advised to wear a medical alert bracelet or carry a card that identifies your condition and treatment needs. It can be a lifesaver in emergencies.

7. Make Smart Lifestyle Choices

A balanced diet helps in overall health. Avoid smoking and limit alcohol as it can interfere with your body’s healing and increase the risk of complications.

Be cautious with over-the-counter medications. Some common drugs like aspirin and NSAIDs (e.g., ibuprofen) can worsen bleeding. Always consult your doctor before taking new medications or supplements.

8. Support Mental Health and Community Connection

When living with haemophilia, It's normal to experience feelings of frustration, isolation, or anxiety. Talking to a mental health professional, joining a support group, or connecting with others in the haemophilia community will be helpful for your mental health.

Conclusion: Expert Care

The right care can make all the difference. Believers Hospital, Thiruvalla, is the best hospital in Kerala for haemophilia treatment. At Believers Hospital, RACTHAM Unit provides the best treatment for haemophilia and other bleeding disorders, delivered with personalised and compassionate care. Our hospital provides Advanced clotting factor therapies for our patients. With consistent medical support, a balanced lifestyle, and a strong support system, people with haemophilia can thrive.