People with haemophilia lack a clotting factor in their blood. This results in prolonged bleeding, which is particularly dangerous when it occurs internally – in joints or in vital organs such as the brain, heart or kidneys (see Understanding haemophilia). Even minor knocks can result in bleeding and extensive bruising. Here’s what you can do to help a loved one.
Have their prescribed medication available
Ensure that they have their prescribed medication available at all times to administer in the event of an injury or spontaneous bleed, and that you know where to take them for assistance, especially when travelling away on holiday, says Bradley Rayner, who has severe haemophilia and who heads up projects at the South African Haemophilia Foundation (SAHF). “Find out where they can be treated and keep contact numbers available. The SAHF can assist.”
The importance of a medic alert bracelet
Ensure that they have and wear a medical alert bracelet: “It speaks for them when they cannot,” Rayner says. It’s advisable that caregivers, family members, friends, colleagues, gym staff, sports coaches and health care professionals (especially dentists) know about the condition before any activity or procedure, and have an agreed management plan.
Be aware of the signs and symptoms of haemophilia
This includes internal bleeds, and tell others about them too – especially signs of bleeding in the brain: a painful headache, vomiting, sleepiness, lethargy, blurred vision, sudden weakness, convulsions, reddish pee or black stools.
Keep an eye out for blood-thinning medication
Remind the person with haemophilia to avoid certain medications that may thin their blood, such as warfarin or heparin, and over-the-counter medications such as aspirin or ibuprofen (paracetamol is safe for people with haemophilia).
Encourage good dental hygiene
Encourage good dental hygiene with thorough but gentle tooth brushing and flossing, to avoid the need for dental work, which can result in excessive bleeding.
Encourage healthy exercise
Encourage healthy exercise for muscle and bone strength to help them avoid falls. The exercise itself should be safe, such as swimming, walking and dancing. There are people with haemophilia who play cricket, but contact and combat sports (rugby, wrestling) should be avoided.
Insist on protection
See that they use appropriate protective gear at all times (helmets, knee and elbow pads).
Make home a safe place
Safeguard the home for young children by removing or covering sharp corners and securing mats to prevent tripping.
Have medical supplies at the ready
Always have gauze, bandages and ice packs handy. If there’s an external bleed, apply pressure to slow or stop it, bind the injury, then apply an ice pack to help slow bleeding. An ice pack may also help prevent bruising. “Treat with clotting factor as soon as possible,” says Rayner. “A good way to remember what to do is RICE: Rest, Ice, Compression, Elevation for bleeds.”
Insist on regular medical check-ups
See that they go for regular check-ups – twice a year at the haemophilia clinic, where various assessments will be done, such as physical and blood tests, and any further medical management will be scheduled. Keep informed: do research on reputable websites attached to established medical or academic centres, speak to doctors about new developments, and explore support groups for the person with haemophilia and for you. The SAHF has social media platforms online.
For more information, go to www.haemophilia.org.za
Also read: Understanding haemophilia
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