Frequently Asked Questions
If a person with haemophilia cuts themselves, will he bleed to death?
No. People with haemophilia have blood that doesn’t clot properly so it will bleed or seep for a longer time. With appropriate treatment, it will definitely stop. Bleeding is mostly internal. The person does not bleed faster – it just takes more effort to stop persistent bleeding. Bleeding from cuts can usually be controlled, at least temporarily, by applying pressure over the cut.
Can I catch haemophilia from an affected person?
There is absolutely no way haemophilia can be “caught” like a cold. Haemophilia is hereditary, however in 1/3 of cases it appears in families with no previous history of the disorder. It affects males almost exclusively and is passed on through unaffected females who carry the defective gene. When the father has haemophilia and the mother is unaffected, none of the sons will have haemophilia, but all of the daughters will be carriers.
Are there different types of haemophilia?
Yes. Each type refers to the lack of a specific clotting factor. Factors VIII and IX are the most common deficiencies, however others do exist. Factor VIII deficiency is known as Haemophilia A while Haemophilia B refers to deficiency of Factor IX. Haemophilia can be mild, moderate or severe, depending on the degree of the deficiency (i.e., how much factor is missing). For example, haemophilia is considered mild when 5-25 % factor VIII or IX activity is measurable, moderate when 1-5% factor VIII or IX activity is measurable, and severe when less than 1% factor VIII or IX activity is measurable.
Is there a cure for haemophilia?
There is no cure yet for haemophilia. It is a life long condition, but the development of clotting factor concentrates has meant that haemophilia can be managed effectively. Haemophilia is treated by replacing the missing clotting factor in the blood. The a product that contains the required factor (Factor VIII or IX) is injected into a vein. Bleeding stops when enough clotting factor reaches the bleeding site. It is very important that treatment is given as quickly as possible to prevent long-term damage. People with haemophilia infuse factor concentrates either as prophylaxis to prevent bleeding or on-demand treatment to stop a bleed once they happen. Modern treatment means that most people with haemophilia can administer their own infusions at home or wherever a bleed occurs.
People with haemophilia should not take aspirin (ASA or acetylsalicyclic acid), or anything containing aspirin, because it interferes with the stickiness of the blood platelets and adds to problems with bleeding.
How safe are the coagulation factor replacements?
Recombinant replacement factors are said to be very safe. While there is still a small amount of human albumin in most types, this has never been known to carry viruses and has been used for many years. It is acknowledged that no product can ever be totally safe, but the risk of bloodborne virus infection from plasma-derived products is greater than the risk of infections from recombinant products. Small countries, such as New Zealand, which have their own fractionation pool have an advantage by having a local product over which they have some control, but are disadvantaged by being restricted by a lack of choice of product.
What should I do if I have haemophilia and have a bleed?
You may feel pain, heat, tingling or bubbling sensations together with swelling and stiffness. It is very important that the bleed is treated quickly. This minimises the damage that can occur at a muscle or joint following a bleeding episode. When you suspect you or your child has a bleed, you should:
- Administer factor replacement as soon as possible
- Follow the PRICE regimen - Protection, Rest, Ice, Compression and Elevation.
- Contact the Haemophilia Centre to report the bleeding episode and arrange an appointment with your Nurse or Physiotherapist.
For more details, download this handy guide from the Auckland DHB Haemophilia Centre.
Can people with haemophilia play any sports?
People with haemophilia will find that sport strengthens joints and muscles, helping prevent bleeds. Care needs to be taken when choosing a sport as rough high contact sports, such as rugby and boxing, are not usually recommended as they may cause bleeds. People learn to manager their condition and know what is good for them to do. People with haemophilia can play a wide range of sports. Swimming is the best sports for people with haemophilia as it provides aerobic exercise while the water provides a natural cushion for the limbs.
Do children with haemophilia have to always wear protective clothing and helmets?
No. Everyone – whether they have haemophilia or not – should wear protective gear appropriate for their sport, e.g., a helmet should be worn by all children when cycling and standard safety gear worn when playing cricket. Today’s treatments mean that protective clothing is not necessary for everyday activities.
Can people with haemophilia work?
Certainly! There are doctors, accountants, small business people and shop assistants with haemophilia. In fact, people with haemophilia can do just about any job they like. They should, however, avoid occupations that increase their chances of bleeds. (e.g. professional wrestling!) Some adults with haemophilia may find that they are not able to work as long as other people. This is usually because of severe arthritis, rather than haemophilia itself.
Can people with haemophilia travel?
Yes. They just have a little more organising and packing to do. They need to contact their Haemophilia Treatment Centre to organise enough treatment product and equipment for the time they are away. They also need to find out where the nearest Haemophilia Treatment Centres are to where they will be staying. If the treatment product is being taken out of New Zealand, they will need a letter from your doctor saying why you need it. They will also need a customs form to be allowed to bring unused product back into New Zealand.
Do bleeding disorders just affect males?
No. Bleeding disorders can affect females as well as males. Although severe haemophilia in females is extremely rare, many women who carry the gene for haemophilia only have low levels of factor VIII or IX and experience symptoms similar to mild haemophilia. Generally, this condition is known as being a "symptomatic carrier".
von Willebrand disorder (vWD) is the most common bleeding disorder that affects women. vWD is caused by a deficiency and/or malfunction of the von Willebrand factor, which causes platelets to form a blood clot and protects Factor VIII. It affects males and females equally, though women tend to have the added issue of menstruation.