Joint health: supporting your partner with haemophilia

Joint health: supporting your partner with haemophilia

As the partner of someone living with haemophilia, you may be aware that they can experience haemophilia-related bleeds. This may trigger some questions, such as why and how does this affect their joints? What do joint problems mean for us as a couple? How can I help?

How can haemophilia affect joints?

  • Joint bleeds are the most common type of bleed in people with haemophilia (particularly the elbows, ankles and knees).1 Depending on the severity of your partner’s haemophilia, a joint bleed can be triggered by an injury or it might happen for no apparent reason.2 

  • Having a joint bleed can be very painful and your partner might need time to rest and recover, maybe even at hospital.3 It’s important to seek support to help safeguard against developing joint problems in the future.4,5

  • Joint problems can affect different aspects of life, such as work and general mood.3,6 You might have noticed some of these changes in your partner over time. Remember, joint problems can happen to anyone at any age.

There are ways for your partner to maintain and improve their joint health, both on their own and with support from their care team.

How can my partner keep on top of joint health?

  • Prophylactic therapy: Some treatment are designed to prevent bleeds from happening2,5 and sticking to a preventative treatment schedule can help to ensure that bleeds do not occur.4,5 Your partner should ask their doctor for a treatment review if they’re experiencing bleeds while on prophylactic therapy.
  • Physiotherapy and rehabilitation (recovery): Physiotherapists are a key source of support for people with joint problems.4 They use and teach techniques to help manage joint problems and pain after a bleed and during recovery.3,4 Your partner should speak with their haemophilia doctor if they would like to be referred to a physiotherapist.
  • Exercise: Being active has many health benefits and helps to build strength in joints and muscles.7,8 While, your partner might avoid exercise if they fear it will cause a bleed or if they experience pain,8 they can ease into an activity they enjoy at a level that suits them.8 Remember to speak to your partners care team before they engage in any physical exercise.
  • Emotional support: The strain of mobility issues and pain can lead to frustration and negative feelings.3 A psychologist might become part of your partner’s care team to help with the emotional challenges they are facing.
  • Surgery: If your partner’s joint problems are more complicated, they may be referred for surgery to correct or replace the affected joint.9 This can have long-term benefits for them,4 even if they need a long period for recovery.

How can I support my partner?

  • Understand the challenge: At times, your partner might struggle to do certain things with you (like travelling) if their joints are stiff or if they’re in pain. If this is the case, focus on all the other activities that you can enjoy together as a couple.
  • Make exercise a shared activity: Remind your partner of any at-home physiotherapy exercises they’ve been taught – you could even them together! Also encourage them to be active, no matter how small it might seem – suggest a gentle stroll or swimming together.
  • You’re a team: Having haemophilia doesn’t define your partner or your relationship. Let your partner know how much you care for them, listen to their worries, ask how you can help and provide support where you can.

Always consult your healthcare professional before engaging in physical activities, exercises or sport.

 

References: 1. National Hemophilia Foundation. Common bleeding episodes (accessed March 2020). 2. WFH. Guidelines for the management of hemophilia – 2nd edition (accessed March 2020). 3. Auerswald G, et al. Blood Coagul Fibrinolysis 2016;7(8):845–854. 4. Knobe K and Berntop E. J Comorb. 2011;1:51–59. 5. van Vulpen LFD, Holstein K and Martinoli C. Haemophilia. 2018;24 Suppl 6:44–49. 6. O’Hara J, et al. Health Qual Life Outcomes. 2018;16(1):84. 7. Steps for living. Benefits of sports and fitness (accessed March 2020). 8. WFH.

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.

Joint health: supporting your partner with haemophilia

As the partner of someone living with haemophilia, you may be aware that they can experience haemophilia-related bleeds. This may trigger some questions, such as why and how does this affect their joints? What do joint problems mean for us as a couple? How can I help?

How can haemophilia affect joints?

  • Joint bleeds are the most common type of bleed in people with haemophilia (particularly the elbows, ankles and knees).1 Depending on the severity of your partner’s haemophilia, a joint bleed can be triggered by an injury or it might happen for no apparent reason.2 

  • Having a joint bleed can be very painful and your partner might need time to rest and recover, maybe even at hospital.3 It’s important to seek support to help safeguard against developing joint problems in the future.4,5

  • Joint problems can affect different aspects of life, such as work and general mood.3,6 You might have noticed some of these changes in your partner over time. Remember, joint problems can happen to anyone at any age.

There are ways for your partner to maintain and improve their joint health, both on their own and with support from their care team.

How can my partner keep on top of joint health?

  • Prophylactic therapy: Some treatment are designed to prevent bleeds from happening2,5 and sticking to a preventative treatment schedule can help to ensure that bleeds do not occur.4,5 Your partner should ask their doctor for a treatment review if they’re experiencing bleeds while on prophylactic therapy.
  • Physiotherapy and rehabilitation (recovery): Physiotherapists are a key source of support for people with joint problems.4 They use and teach techniques to help manage joint problems and pain after a bleed and during recovery.3,4 Your partner should speak with their haemophilia doctor if they would like to be referred to a physiotherapist.
  • Exercise: Being active has many health benefits and helps to build strength in joints and muscles.7,8 While, your partner might avoid exercise if they fear it will cause a bleed or if they experience pain,8 they can ease into an activity they enjoy at a level that suits them.8 Remember to speak to your partners care team before they engage in any physical exercise.
  • Emotional support: The strain of mobility issues and pain can lead to frustration and negative feelings.3 A psychologist might become part of your partner’s care team to help with the emotional challenges they are facing.
  • Surgery: If your partner’s joint problems are more complicated, they may be referred for surgery to correct or replace the affected joint.9 This can have long-term benefits for them,4 even if they need a long period for recovery.

How can I support my partner?

  • Understand the challenge: At times, your partner might struggle to do certain things with you (like travelling) if their joints are stiff or if they’re in pain. If this is the case, focus on all the other activities that you can enjoy together as a couple.
  • Make exercise a shared activity: Remind your partner of any at-home physiotherapy exercises they’ve been taught – you could even them together! Also encourage them to be active, no matter how small it might seem – suggest a gentle stroll or swimming together.
  • You’re a team: Having haemophilia doesn’t define your partner or your relationship. Let your partner know how much you care for them, listen to their worries, ask how you can help and provide support where you can.

Always consult your healthcare professional before engaging in physical activities, exercises or sport.

 

References: 1. National Hemophilia Foundation. Common bleeding episodes (accessed March 2020). 2. WFH. Guidelines for the management of hemophilia – 2nd edition (accessed March 2020). 3. Auerswald G, et al. Blood Coagul Fibrinolysis 2016;7(8):845–854. 4. Knobe K and Berntop E. J Comorb. 2011;1:51–59. 5. van Vulpen LFD, Holstein K and Martinoli C. Haemophilia. 2018;24 Suppl 6:44–49. 6. O’Hara J, et al. Health Qual Life Outcomes. 2018;16(1):84. 7. Steps for living. Benefits of sports and fitness (accessed March 2020). 8. WFH.

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.