A woman and a man on a canoe in a lake, one sitting down and looking in the distance and the other standing up holding a paddle over their head

Haemophilia and you

Joint health: supporting your partner with haemophilia

Navigating haemophilia and joint health together

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?

Discover how haemophilia can impact joints, how to stay on top of joint health, and how to support your partner.

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 Joint damage can affect daily life, both physically and emotionally.

Having a joint bleed can be very painful, and your partner might need time to rest and recover, maybe even at the 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.

Young Man in Nightclothes Suffering in the Morning

How can my partner keep on top of joint health?

Prophylactic therapy

Some treatments are designed to prevent bleeds from happening^2,5 and sticking to a preventative treatment schedule can help prevent bleeding.^4,5 Your partner could 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 partner’s 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?

Man and Woman Sitting Together at the Table

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.

NP-9944 & NP-9943

Download tools

Download two tools to support your partner about joint health

Download factsheet 1 "Supporting your partner’s joint health"

Download factsheet 2 "Supporting your partner’s joint health"

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;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. Exercises for people with hemophilia. Accessed March 2020.

9. Rizzo AR, et al. Clin Cases Miner Bone Metab 2017;14(2):197–199.

Selected content to continue your reading

Adults

Renato from Slovenia

"And from the time that I am monitoring my factor levels, I live quite a liberated life."

Finding community support & tools library

Discover your liberation goals

What does liberation mean for you? What are the things you want to do or keep doing? Complete the Liberation Map quiz to reflect on aspects of your wellbeing that you aspire to improve so you can discuss them with your doctor and get the support you need to pursue your goals.

Person wearing glasses, looking at the computer screen