In most cases it is now possible to lead a full and active life with a bleeding disorder, and
you can expect to live as long as someone without one. Here are five top tips to help you
stay well, but you will discover more as you learn to live with your bleeding disorder.
Tip 1: Treat bleeds early
Learn how to spot the signs of an internal bleed. You may have bumped into something
hard and begun to see bruising on top of the normal pain of injury, or you may have known that your child had fallen over. People with a severe bleeding disorder can also bleed without any noticeable injury. This is known as a spontaneous bleed and may be less visible and the pain may be delayed.
If you have treatment at home or carry it with you then you can treat yourself, but you can also seek advice and/or treatment from your regular haemophilia centre during clinic open hours. If it is an evening or weekend, go to your hospital’s Emergency Department and on the way try to contact their on-call haematology team to help ensure the quickest possible treatment when you arrive. The principles of R.I.C.E. are good to follow, especially if you can’t access treatment straight away.
Rest – use a sling or pillows, don’t move the limb or walk on it.
Ice – wrap ice in a damp towel and apply for five minutes, remove for ten, then repeat.
Compression – use a stretchy bandage or elastic stocking (but not if it hurts a nerve).
Elevation – raise the area that is bleeding above the heart.
Tip 2: Use your prophylaxis treatment to prevent bleeds
People with severe haemophilia A and B, and also sometimes other bleeding
disorders, may treat themselves regularly, even if there is no sign of bleeding. This is
known as prophylaxis – it helps protect the body from spontaneous bleeds and bleeding
from smaller injuries.
Tip 3: Do the right sort of exercise to help prevent bleeds
It’s easy to think that any sort of exercise could cause a bleed, but in fact the opposite is
true. Sport and most forms of exercise help build up muscle strength, which helps prevent spontaneous bleeds and joint damage. But it’s important to enjoy the right sort of sport swimming, badminton, cycling and walking are generally safe, whilst contact sports such as rugby or boxing are not recommended. Take advice and come to your own decision about which sports in between these two extremes are appropriate for you.
The National Hemophilia Federation in the USA has produced a detailed analysis of main types of sport and exercise. The more common types are listed in the box.
● Elliptical machine training
● Exercise bike
● Swimming (not diving)
Low to moderate risk
● Circuit/strength training
● Treadmill running
● Dance (some)
● High intensity training
● Bouncy castle
● Martial arts (some)
● BMX racing
Tip 4: Don’t take aspirin and other non-steroidal anti-inflammatory drugs (NSAIDS)
These drugs are often used to control pain or a high temperature, and aspirin, ibuprofen and other forms of NSAIDs are available over-the-counter. They stop platelets working (and therefore hinder clotting) and make stomach bleeds more likely. They, or any cold or ‘flu remedy that contains them, should not be taken without medical advice.
Tip 5: Tell all your healthcare professionals and dentists about your bleeding disorder
It’s vital that only the right drugs are prescribed and the risk of bleeding from any
procedure (e.g. dentistry and major or minor surgery) is well managed.
Tip 6: Take good care of your teeth and gums
It is important for you to look after your mouth and teeth as you can be affected by both dental decay (caries) and bleeding gums (periodontal disease). These conditions affect people who do not have bleeding disorders. It has been shown that with good oral care and support from your dentist that the incidence of bleeding from the gums can be almost eliminated.
You should register with a dentist and let the doctors and nurses in the haemophilia centre the name and address of your dentist. Children should be registered with a dentist before they are 6 months old and attend for regular examinations. Your dentist will concentrate on preventing dental problems and discuss foods which are likely to cause problems. As you get older the frequency of visits may alter and you may also be asked to see the dentist who works with your haemophilia centre occasionally as you may need to be referred to them if you every require a tooth removed.
Your dentist will need to discuss any treatment plans with your haemophilia doctor and the timing may need to be adjusted to allow for treatment from the haemophilia centre. It should be possible for your dentist to provide the same comprehensive care as any other patient. A few patients may need some of their treatment carried out in a hospital so that you can be monitored by the haemophilia centre. This will be discussed with you as required.
If you look after your teeth they will last a lifetime and if you follow the advice on a healthy diet, regular tooth-brushing and visit your dentist this will reduce the need for dental care.
If you have problems registering with a dentist please discuss this at your next visit to the haemophilia centre and they will be able to help.