FAQs

That's something you might want to talk to your parents about or your Treatment Centre, but it is your choice. Sometimes the best explanation is for you to tell them, but you could also ask the nurse from your Treatment Centre to go to the school and talk to your teachers and/or the kids in your class.

Yes. When your teachers are planning the camp or any excursions they will speak to your parents about any help you might need while you are away. Before you go away your Haemophilia Treatment Centre can write to the nearest hospital or GP in the area that you are going to, to explain what care you might need while you are there. You can take your treatment product and sterile supplies with you and the GP or a doctor at the hospital can give you your treatment or contact your Haemophilia Treatment Centre if they have any queries. Sometimes your mum and dad might come on the camp to help out as one of the parent helpers.

A port or infusaport is a special device that is put under the skin on your chest. It has a tube that goes into one of your big veins in the neck. You can use this port for your treatment instead of seeking out a new vein in your arm. You need a small operation to have the port put in.

No. When you have your treatment through your port we put "magic cream" or special numbing cream on the skin that is over the port so you don't feel the needle. Sometimes you can feel a little pushing when the needle goes in, but that doesn't hurt.

Yes, you can play non-contact football. It is good to learn skills and how to play safely. Talk to your Haemophilia Treatment Centre about it.

Usually schools are very helpful about rescheduling exams if medically necessary. They will probably need a letter from your doctor and an estimated time as to when you will be back at school. In the senior years at high school you can apply for consideration of disadvantage in advance so that, should you need it, arrangements are made on your behalf.

Von Willebrand disease (VWD - also known as von Willebrand disorder) is a bleeding disorder in which people do not have enough of a protein called von Willebrand factor in their blood or the von Willebrand factor does not work properly. Because of these problems, it takes longer for bleeding episodes to stop.

Von Willebrand disease occurs in both males and females. It occurs when there is a change in a person's von Willebrand factor (VWF) gene affecting their blood clotting and causing VWD. VWD is usually inherited and a person is born with it.

Bleeding from VWD often involves the mucous membranes, the delicate tissues that line body passages, such as the nose, mouth, uterus, vagina, stomach and intestines.

VWD symptoms vary, even in the same family, and may include frequent nose and gum bleeds, easy bruising, heavy menstrual periods, prolonged bleeding after injury and trauma, childbirth, dental extractions and surgery. When people have the severe form of VWD, they may also have bleeding into joints and muscles.

Many people have a mild form with few symptoms. However, with all forms of VWD there can be bleeding problems. Some people with a mild form of VWD bleed quite often, eg with nosebleeds, bruising and heavy periods. A smaller number of people have the severe form of VWD and as mentioned above, may also experience joint and muscle bleeds, similar to haemophilia.

Current information about von Willebrand disease, statistics and some brief information about treatments is available in the Australian Bleeding Disorders Registry (ABDR) Annual Report.

Read the HFA booklet A guide for people living with von Willebrand disorder for more information on VWD, inheritance, treatment, living well and special issues for women and girls

VWD is the most common type of bleeding disorder worldwide.

Most people with VWD have a mild form with few symptoms. In comparison to the number of people with the mild form of VWD, the form of VWD causing moderate bleeding is uncommon, and the severe form is rare.

More than 2,450 people have been diagnosed with VWD in Australia but many others are thought to be undiagnosed.

Because most people with VWD have the mild form, they may not be aware they have VWD until they have a serious injury, surgery or dental extractions, or serious bleeding after childbirth. Heavy menstrual bleeding is a common symptom in females but may not be recognised as VWD until other bleeding symptoms are investigated. 

VWD can be difficult to diagnose and repeated testing may be needed to confirm the diagnosis. Understanding the laboratory tests is complex and needs to be done by specialists with experience in VWD.

There is not always a family history. Some people have VWD because there was a mutation or change in the von Willebrand factor gene during their foetal stage.

When this happens, the gene change can be passed on from the person to their children like someone who has inherited the condition. VWD can also be acquired rather than inherited, but this is very rare.

Yes. Because the VWD gene is linked to an autosome (a chromosome that is not a sex chromosome), not an X or Y chromosome, both females AND males can carry and be affected by VWD.

For more information about VWD inheritance, click here.

When blood vessels are damaged, platelets (tiny particles in the blood) clump together at the site of injury; von Willebrand factor is like glue that makes these platelets stick to the areas of blood vessel that are damaged. Von Willebrand factor also acts as a protector of clotting factor VIII. This means some people with von Willebrand disease may also have a lower amount of factor VIII.

VWD is divided into "types" according to whether a person has a low amount of von Willebrand factor or has a type of von Willebrand factor that does not work properly, or both. Knowing the type of von Willebrand disease helps the doctor decide what kind of treatment would be best for that person.

• Type 1: This is the most common form of von Willebrand disease.  A person with type 1 von Willebrand disease has low levels of von Willebrand factor (VWF) but the von Willebrand factor present functions normally. Symptoms are usually mild. However, some people with type 1 can have very low levels of VWF and have severe bleeding problems. People with type 1 make up more than 80% of cases of this disorder.
• Type 2: A person with type 2 often has a normal amount of von Willebrand factor in their blood but has an irregularity in the von Willebrand factor they produce. This type is divided into sub-types 2A, 2B, 2M and 2N. Certain sub-types might require different treatment, which makes knowing the exact type of VWD you have very important.
• Type 3 is very rare. People with type 3 VWD have very little or no VWF in their blood and also have low factor VIII (8) levels. Bleeding can occur often, be more severe and can also include joint and muscle bleeding. 

Nevertheless, it is important to remember that there can be bleeding problems with all forms of VWD and any bleeding that occurs with VWD needs to be assessed and treated. 

VWD was discovered in 1925 by, and named after, the Finnish doctor Erik von Willebrand. Professor von Willebrand described this new type of bleeding disorder after observing families living on the Aaland Islands between Sweden and Finland who had bleeding problems. It is also known as von Willebrand disorder.

No. Many people who have the gene change causing VWD carry it without symptoms. In fact, they may not even realise they have it. However, the condition can still be passed on to children.
 

A few bruises do not necessarily indicate the presence of VWD. However, if you think you may have VWD, talk to your doctor about your concerns.

Surgery, including tooth extractions, can cause bleeding for people with VWD. It is important you tell your surgeon you have VWD well before your surgery date so they can work with your haematologist and other key staff to ensure you receive the best possible treatment and care.

No. All bleeding disorders can affect females as well as males.

Von Willebrand disease (VWD) is the most common bleeding disorder worldwide. It affects males and females equally, though women tend to have the added issue of heavy bleeding with menstruation (heavy periods) and sometimes after giving birth. For more information click here.

Many girls or women who carry the gene alteration causing haemophilia do not have symptoms of a bleeding disorder.

But around 20-30% have reduced factor levels and bleeding problems associated with haemophilia. In the past they were described as 'symptomatic carriers'.

• If their factor levels fall in the range for mild haemophilia (5-40% of normal clotting factor), they are now recognised to have mild haemophilia.
• In some very rare cases girls and women have particularly low factor levels causing them to have moderate or severe haemophilia.
• Some women with factor levels at the lower end of normal (40-50%) also experience abnormal bleeding. If further investigation indicates this bleeding is related to a factor VIII or factor IX deficiency, they will be treated as having haemophilia but diagnosed as a 'symptomatic haemophilia carrier'.