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This website is intended for carers and patients living with haemophilia.
Please select from the list of Frequently Asked Questions below:
- What does it mean to have haemophilia?
- How does it impact on everyday life?
- Does it go away or will it get worse or better?
- What if I have a bad bleed, is it dangerous?
- Will it have an effect on how long I live?
- Are there things I should avoid?
- Can I play sport?
- How often is haemophilia treated and will it hurt?
- How did he get it?
- Are there any support groups?
- What should I do in an emergency?
- What about holidays and travelling?
- My son wants to stay with friends, what should I do?
- Does diet have any impact on haemophilia?
- How common is haemophilia?
- What are the chances of future children having haemophilia?
- What do I tell school? What happens if he has a bleed at school?
- Are there other people with haemophilia I can speak to?
- What does it mean to have an inhibitor in hereditary haemophilia?
- What does it means to have acquired haemophilia?
- How does having an inhibitor impact on everyday life?
Having haemophilia means that your blood cannot clot properly. Contrary to popular belief, this doesn't mean that you are liable to bleed to death from a minor cut, neither would you bleed faster than other people if you get injured. You can, however, bleed for longer. Although bleeding can be from cuts or grazes on the skin most bleeding that occurs is internal, into muscles and joints (click here for more information).
For a child, if properly managed, haemophilia does not need to have a big effect on everyday life. However, caring for a child with a long-term condition can require some general family adjustments and your specialist care team will be able to advise you on things to look out for. For adults haemophilia can still have a big impact on everyday life, however appropriate management can help to reduce this effect.
There is no cure for haemophilia, however, with care and regular treatment, someone with haemophilia can live a healthy, normal life.
Internal bleeding can be serious and treatment with clotting factor is necessary when it occurs in the head, joints, muscles or internal organs. Don't forget, delaying treatment can cause long-term damage to the joints or bleeding to continue for longer. (click here for more information).
Although in the past haemophilia affected life expectancy, today due to improved treatments and knowledge about haemophilia, patients should expect to have a normal lifespan.
People with haemophilia should be careful with any rough physical activities where there is a strong likelihood of causing a bleed. Also, certain medications should not be taken as they can make a bleed more difficult to control or can cause more 'spontaneous' bleeds (click here for more information). These include certain widely available painkillers (such as aspirin and non-steroidal anti-inflammatory drugs) or cold remedies, so it is important to know which treatments can be given to relieve pain. Speak to your specialist care team for advice.
Being physically active is essential for a healthy life, whoever you are, and this does not change because you have haemophilia. In fact, sensible exercise can be even more beneficial to someone with haemophilia as it helps you to develop strong bones and muscles that can protect joints from the stresses of daily life. People with haemophilia do need to be careful with any rough physical activities where there is a strong likelihood of causing a bleed so non-contact sports such as swimming, badminton and golf are recommended (click here for more information). Speak to your specialist care team for advice.
Everyone is different but your specialist care team will determine how regularly you or your son needs injections of clotting factor. This treatment can be ‘on demand' (provided before surgery or dentistry or once a bleed has started) or ‘prophylaxis’ (provided to prevent bleeds starting in the first place) (click here for more information). In some Haemophilia Centres a play therapist will help to introduce young children to their injections as this can make things seem less daunting. Although the infusions can cause mild discomfort, this is nothing to be worried about as you or your son should quickly get used to treatment. If you, or your son, do find injections painful there are also anaesthetic creams that can be applied to the skin before an injection, which significantly reduce any pain.
Haemophilia is caused by a genetic disorder that is either hereditary or, in approximately 30% of cases, it can occur spontaneously (click here for more information).
There is a lot of support available. Your first point of contact for any query should be your Haemophilia Centre but another good resource is the Haemophilia Society, who provide information, advice and support services for people with haemophilia (click here for more information). Membership to the Haemophilia Society is now free. Also, your Haemophilia Centre will be a good source of support and advice.
If a bleed occurs factor treatment should be given as soon as possible (click here for more information). If there is more bleeding than usual, or the bleeding doesn't stop, contact your specialist care team for advice. In general if there is anything you are unsure about always seek professional advice. Also you should always carry some form of medical information/identification in case of an accident. Some people choose to wear a medic alert wristband, which can be found on the website www.medicalert.org.uk. Your Haemophilia Centre will also issue you with a “Green Card” to alert other health professionals about your condition and where to obtain specialist advice.
Going overseas is usually fairly straightforward although going to developing countries can present certain challenges. You should take a list of treatment centres in the country being visited, plus a letter explaining about your haemophilia care in the language of that country (click here for more information). More tips on preparing for a holiday or trip abroad can be found on travelfactor.co.uk. It is helpful to discuss any planned holidays with your local Haemophilia Centre, so they can give advice on the nearest Haemophilia Treatment Centre to where you are staying.
The first time your child stays away from home is an anxious time for any parent. Staying with friends should not be a problem as long as the parents or guardians responsible for your son know what do to in an emergency.
No, however, as with everyone it is important to ensure that you, or your son, receives a healthy, balanced diet containing at least five portions of fruit and vegetables a day.
There are two types of haemophilia. Haemophilia A is the most common, affecting one in 5,000 males, and haemophilia B affects one in 30,000 males (click here for more information).
Having one son with haemophilia does not decrease or increase the chance of having another. Regardless of how many children parents have, if the mother is a carrier of haemophilia any sons that she has will have a 50% chance of inheriting the disorder and daughters have a 50% chance of being a carrier. For someone with haemophilia their sons will not have haemophilia but all of their daughters will be carriers (click here for more information).
Before he starts school there are likely to be plenty of forms to fill in and the family will also need to provide the school itself with lots of information. Every school will have a different policy on how to act if your child has a bleed, for example whether or not you can store factors in school etc. Find out what the school's policy is and ensure that the school is aware of who to contact if a bleed occurs. Shire has produced information called Haemophilia in the Classroom, which is aimed at informing school staff about haemophilia, (click here for more information) or speak to your Haemophilia Centre for further information. It is common for your Haemophilia nurse to liaise with school and in some cases visit to provide advice.
There are several resources available to you, see the ‘Useful Links' section on this website (click here for more information). In addition, your haemophilia care nurse may be able to put you in touch with other local families with children with haemophilia.
Having an inhibitor in hereditary haemophilia, means that your body produces antibodies to your clotting factor treatment. This means that your bleeds are more difficult to treat than those with haemophilia who do not have inhibitors (click here for more information).
Having acquired haemophilia means that your body produces an inhibitor (antibodies) against your body's own clotting factor. The inhibitor binds to the clotting factor resulting in a reduced factor activity level in the blood (click here for more information).
It is difficult to predict how having an inhibitor may impact on everyday life as this varies from person to person. If managed effectively with the specialists at your Haemophilia Centre, you might find that your inhibitor does not have a big effect on everyday life. However, having an inhibitor generally means additional trips to hospital and, in some cases, inhibitors can have a big impact on everyday activities due to bleeding episodes.