let s talk bleeds a bleed checklist for haemophilia patients

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1 let s talk bleeds a bleed checklist for haemophilia patients Specific signs of a bleed Watch for Bruising, with or without lumps Difference in the size of arms/legs Difference in movement in arms/legs Feel for th Tenderness over joints and muscles Be alert to Crying or discomfort when picked up Unsettled behaviour for no apparent reason Difficulty rolling, crawling, standing or reaching for objects Bleeds in the following areas are especially serious: Eye Face Throat Hip or groin Call or go to your Haemophilia Treatment Centre as soon as possible Look out for bleeds daily, during nappy changes, bath time and when dressing your child. Your child has two of each joint, so comparing them may help spot any changes. Head/neck* Vomiting and/or fits Difficulty crawling or walking straight Bleeding from the ears or nose Difficulty breathing Irritability, sleepiness, unable to wake-up Stomach Red or brown pee Red or black poo Vomiting blood or black, syrup-like material (may look like coffee grounds)* Joint Child protecting joint Loss of movement Unwillingness to use the affected arm or leg Unable to reach or kick th and swelling of joint area Crying or discomfort when joint moved Inability to put a heel on the floor when walking or standing Spinal cord* Weakness or pain in arms or legs Trouble with urination or bowel movements Muscle Reduced movement or use of arms or legs, possible warmth and tightness when touching area Crying when area moved or touched Unwillingness to use the affected arm or leg Inability to put a heel on the floor when walking or standing In case of any symptom of a bleed, please contact your Haemophilia Treatment Center as soon as possible. *THESE SYMPTOMS REQUIRE ATTENTION FROM EMERGENCY MEDICAL SERVICES

2 let s treat joint bleeds advice for parents of 0 6 year olds TalkingJoints is a programme of information, education and support that talks to healthcare professionals, patients and carers about haemophilia and its impact on joint function. TalkingJoints aims to help individuals detect changes early (feel something) and act accordingly (do something). We hope that by helping people with their joint function we can help improve the way they live with haemophilia, for the better. Joint bleeds cause damage to your child s joints that gets worse over time. This damage can cause pain and reduce your child s mobility. However, there are simple things you can do to actively look after the health of your child s joints and so limit the impact of joint damage. Bleeding episodes can be scary, so it helps to plan in advance. Your Haemophilia Treatment Centre (HTC) can help you make plans that are right for you and your child. It s important to treat bleeds early: Early treatment means less blood in joints. Treat as soon as possible, ideally within the first 2 hours. Sensing when a bleed is happening is the first step in taking action. Like any bleed, joint bleeds should be treated by following the advice from your HTC. Treatment can include administration of clotting factor, either by you at home or at the HTC. What else can you do? P.R.I.C.E. Protection protect the injured joint from further damage, perhaps by using a sling or crutches. Rest rest the joint for at least 24 hours or longer. Quiet games and videos may help to pass the time. Ice applying ice can help ease pain. Wrap crushed ice in a damp towel and apply for mins every two hours. NEVER apply ice directly to the skin. Compression wrap the injured joint in a compression bandage or stocking for the first 24 hours. Check frequently to make sure the wrap is not too tight. Use with caution in young children who may not be able to tell you it is too tight. Elevation elevating the affected joint can help to limit further bleeding and swelling. Choose what works for you and your child. HQMMA/CH/0215/0047 What else can you do? Help your child to a healthy lifestyle Lifestyle choices such as helping your child keep fit and have a healthy weight, and being more aware of what activities help or harm their joints are all part of protecting your child s joints. For major bleeds, if you are in doubt then contact your Haemophilia Treatment Centre. HTC NAME AND ADDRESS: CONTACT NUMBERS: Day: Emergency: References Canadian Hemophilia Society book All about hemophilia chapters 4 and 10. Available WFH guidelines: Srivastava, et al., Haemophilia, 2013; 19(1): e1-47. Changing Possibilities in Haemophilia is a registered trademark owned by Novo Nordisk Health Care AG and the Apis bull logo is a registered trademark of Novo Nordisk A/S

3 let s talk bleeds a bleed checklist for haemophilia patients How do I tell when a bleed is happening? Watch for Bruising, with or without lumps Difference in the size of arms/legs Difference in movement in arms/legs Numbness Weakness Tenderness Tingling Tightness Pain skin Ache Dizziness Call or go to your Haemophilia Treatment Centre as soon as possible if you think you might have a bleed in your Eye Face Throat Hip or groin The more you know about how to SPOT a bleed, the quicker you ll be able to STOP it. Use this checklist of clues to help you. If you find just one of these clues, tell a grown-up immediately Head* Not able to walk properly Blood in my ears or nose Feeling dizzy Feeling very sleepy Blurry vision Tummy Red or brown pee Red or black poo Red or black vomit (may look like coffee grounds)* Muscle Swollen Not able to move my arm or leg properly It hurts, especially when I try to walk Neck and back* Weak or sore arms or legs Trouble going to the toilet Joint (e.g. knee, ankle, shoulder or elbow) Tingling feeling Swollen, larger than the other joint It hurts a little and slowly gets more sore if I don t treat it It hurts, especially when I try to walk Not able to move my arm or leg properly In case of any symptom of a bleed, please contact your Haemophilia Treatment Center as soon as possible. *THESE SYMPTOMS REQUIRE ATTENTION FROM EMERGENCY MEDICAL SERVICES

4 let s treat joint bleeds advice for older children Joint bleeds cause damage to your joints that gets worse over time. This damage can cause pain and reduce your ability to get around. However, there are simple things you can do to actively look after the health of your joints and so limit the impact of joint damage. Bleeding episodes can be scary, so it helps to plan in advance. Your Haemophilia Treatment Centre (HTC) can help you make plans that are right for you. TalkingJoints is a programme of information, education and support that talks to healthcare professionals, patients and carers about haemophilia and its impact on joint function. TalkingJoints aims to help individuals detect changes early (feel something) and act accordingly (do something). We hope that by helping people with their joint function we can help improve the way they live with haemophilia, for the better. It s important to treat bleeds early: Early treatment means less blood in joints. Treat as soon as possible, ideally within the first 2 hours. DO NOT WAIT for pain or joint movement limitations to appear before treating. Sensing when a bleed is happening is the first step in taking action. Like any bleed, joint bleeds should be treated by following the advice from your Haemophilia Treatment Centre (HTC). Treatment can include administration of clotting factor, either by you at home or at the HTC. Treatment at home avoids delays and trips to hospital. Your healthcare professional can help you decide if you are ready to treat yourself. What else can you do? P.R.I.C.E. Protection protect the injured joint from further damage, perhaps by using a sling or crutches. Rest rest the joint for at least 24 hours or longer. Ice applying ice can help ease pain. Wrap crushed ice in a damp towel and apply for mins every two hours. NEVER apply ice directly to your skin. Compression wrap the injured joint in a compression bandage or stocking for the first 24 hours. Check frequently to make sure the wrap is not too tight. Elevation elevating the affected joint can help to limit further bleeding and swelling. HQMMA/CH/0215/0047 What else can you do? Maintain a healthy lifestyle Lifestyle choices such as generally keeping fit, watching your weight and being more aware of what activities help or harm your joints are all part of protecting your joints. Taking early steps to speak to your haemophilia specialist about changes in your joints can make a big difference. For major bleeds, if you are in doubt then contact your Haemophilia Treatment Centre. HTC NAME AND ADDRESS: CONTACT NUMBERS: Day: Emergency: References Canadian Hemophilia Society book All about hemophilia chapters 4 and 10. Available WFH guidelines: Srivastava, et al., Haemophilia, 2013; 19(1): e1-47. Changing Possibilities in Haemophilia is a registered trademark owned by Novo Nordisk Health Care AG and the Apis bull logo is a registered trademark of Novo Nordisk A/S

5 let s talk bleeds a bleed checklist for haemophilia patients How do I tell when a bleed is happening? The more you know about how to SPOT a bleed, the quicker you ll be able to STOP it If you feel something, do something Watch for Bruising, with or without lumps Difference in the size of arms/legs Difference in movement in arms/legs Numbness Weakness Tenderness Tingling Tightness Pain skin Ache Dizziness Call or go to your Haemophilia Treatment Centre as soon as possible if you think you might have a bleed in your Eye Face Throat Hip or groin Head* Not able to walk properly Blood in ears or nose Feeling dizzy Feeling very sleepy Blurry vision Abdomen Red or brown urine Red or black faeces Red or black vomit (may look like coffee grounds)* Muscle Swollen Not able to move arm or leg properly Pain, especially when walking Neck and back* Weak or sore arms or legs Trouble going to the toilet Joint (e.g. knee, ankle, shoulder or elbow) Tingling feeling Swollen, larger than the other joint Gradual increase in pain if untreated Pain, especially when walking Not able to move arm or leg properly In case of any symptom of a bleed, please contact your Haemophilia Treatment Center as soon as possible. *THESE SYMPTOMS REQUIRE ATTENTION FROM EMERGENCY MEDICAL SERVICES

6 let s treat joint bleeds Joint bleeds cause damage to your joints that gets worse over time. This damage can cause pain and reduce your range of motion. However, there are simple things you can do to actively look after the health of your joints and so limit the impact of joint damage. advice for teens and adults TalkingJoints is a programme of information, education and support that talks to healthcare professionals, patients and carers about haemophilia and its impact on joint function. TalkingJoints aims to help individuals detect changes early (feel something) and act accordingly (do something). We hope that by helping people with their joint function we can help improve the way they live with haemophilia, for the better. It s important to treat bleeds early: Early treatment means less blood in joints. Treat as soon as possible, ideally within the first 2 hours DO NOT WAIT for pain or joint movement limitations to appear before treating. Sensing when a bleed is happening is the first step in taking action. Like any bleed, joint bleeds should be treated by following the advice from your Haemophilia Treatment Centre (HTC). Treatment can include administration of clotting factor, either by you at home or at the HTC. Treatment at home avoids delays and trips to hospital. Having a plan of action developed with your HTC can help you respond quickly. If you can treat yourself, then it s a good idea to take factor with you when away from home, both locally and when on holiday. What else can you do? P.R.I.C.E. Protection protect your injury from undue stress perhaps by using a sling or crutches. Rest rest the joint for at least 24 hours or longer. Ice applying ice can limit joint damage as it reduces the temperature of the tissue at the site of the injury and can help ease pain. Wrap crushed ice in a damp towel and apply for mins every two hours. NEVER apply ice directly to the skin. Compression wrap the injured joint in a compression bandage or stocking for the first 24 hours. Check frequently to make sure the wrap is not too tight. Compression helps to control the amount of swelling and may lead to a quicker recovery. HQMMA/CH/0215/0047 Elevation you should 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. What else can you do? Maintain a healthy lifestyle Lifestyle choices such as generally keeping fit, watching your weight and being more aware of what activities help or harm your joints are all part of protecting your joints. Taking early steps to speak to your haemophilia specialist about changes in your joints can make a big difference. For major bleeds, if you are in doubt then contact your Haemophilia Treatment Centre. HTC NAME AND ADDRESS: CONTACT NUMBERS: Day: Emergency: References Canadian Hemophilia Society book All about hemophilia chapters 4 and 10. Available WFH guidelines: Srivastava, et al., Haemophilia, 2013; 19(1): e1-47. Changing Possibilities in Haemophilia is a registered trademark owned by Novo Nordisk Health Care AG and the Apis bull logo is a registered trademark of Novo Nordisk A/S

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