“I’ve always treated him as the expert. If he says there’s something wrong I’m always on his side, 200 per cent.” (Sine, mother of a haemophilia patient)
Sine's story - mother of a son with haemophilia. Watch as a mother shares her story and knowledge of what it is like to help her son with haemophilia live with as few limitations as possible.
According to the HERO study results most people with haemophilia experience pain that interferes to some extent with their daily lives. Only one in 10 PWH said they had not experienced any pain in the past four weeks that had impacted on their daily lives. Half of the patients who are affected by pain are in constant pain (regardless of whether it was linked to their haemophilia)1. Over a third of patients in the HERO study experienced chronic pain related to their haemophilia2.
Joint damage can significantly impact on quality of life, with affected patients experiencing pain, restricted movement and reduced functional ability. Here are some steps for short-term rehabilitation following a joint bleed, including simple exercises that can be performed at home to mobilise the joints.
1) Treat any joint bleeds immediately with clotting factor, ideally within 2 hours and until the bleed resolves.1
2) Protect the injured joint from undue stress, perhaps by using a sling or crutches.1
3) Rest the joint1 for at least 24 hours or longer – take advice from a healthcare professional.
4) Applying ice can help ease pain.1,2 Wrap crushed ice in a damp towel and apply for 10–15 mins. NEVER apply ice directly to the skin
5) Wrap the injured joint in a bandage or compression stocking for the first 24 hours. Check every 2 hours to make sure the wrap is not too tight.
Compression helps to control the amount of swelling and may lead to a quicker recovery.1,2
6) Elevate the injured area to lower the pressure in the local blood vessels and help to limit the bleeding into the area. Elevating the area will also help to increase drainage of fluids from the injury which limits swelling.1,2
1) Exercise a joint during an active bleed.3
2) Return to a sport/activity following a bleed without discussing with the Haemophilia Treatment Centre.4
3) Forget to appropriately exercise other body parts as able while resting the joint that is healing.5
4) Do high-impact sports or power lifting that may precipitate a joint bleed. 1,3
Always consult your healthcare professional before commencing an exercise programme, including the activities described in this leaflet.
1. Srivastava A et al. Haemophilia 2013; 19(1): e1-47.
2. Lobet S et al. J Blood Med 2014; 5: 207-18
3. National Hemophilia Foundation: Playing It Safe: Bleeding Disorders, Sports and Exercise. 2005, New York: National Hemophilia Foundation.
4. Negrier C et al. Haemophilia 2013; 19(4): 487-98
5. Mulder K. Exercises for people with haemophilia 2006, Montreal, Quebec, Canada: World Federation of Hemophilia.