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 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 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.

VWD is the most common bleeding disorder worldwide but not well known. Many people will experience few symptoms and many are currently undiagnosed. The number of those known to have VWD is ever increasing as more people are diagnosed. Most people with VWD have a mild form with few or no symptoms. Unlike haemophilia, von Willebrand disease occurs in males and females equally.

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

VWD symptoms vary and may include frequent nose and gum bleeds, bleeding after dental surgery, easy bruising, heavy menstrual periods, prolonged bleeding after childbirth or severe bleeding after trauma or surgery. As mentioned above, in some cases, bleeding occurs into joints and muscles.

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

There is not always a family history. Some children have VWD because there was a mutation, or change in the gene, during the foetal stage. When this happens the person's chances of passing von Willebrand disease on to his/her children are the same as those of a parent 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 males AND females can carry - and be affected by VWD.

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. 

Figures vary greatly. Some studies indicate it could affect up to 1% of the population. This is one person in 100.

Most people with VWD have few or no 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.

Most people with VWD have the mild form. For many, it is often so mild that it is not diagnosed at all unless the person has surgery or a major accident. More than 2,300 people have been diagnosed with VWD in Australia but many others are undiagnosed.

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.

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.

VWD affects both males and females in equal numbers whereas most people diagnosed with haemophilia are males. Most people with VWD do not have bleeding symptoms very often, except during or after surgery or accidents, although females can have heavy menstrual bleeding and prolonged and very heavy bleeding after childbirth. This means that more females than males visit a doctor to be assessed for treatment and at an earlier age.

Bleeding symptoms from VWD can vary from person to person, even in the same family. 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. People with haemophilia bleed mainly into joints and muscles.

No. Many people have no 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 he/she 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. 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 altered gene causing haemophilia do not have symptoms of a bleeding disorder. But some do have a bleeding tendency. 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 between 40% and 60% of normal also experience abnormal bleeding. For more information click here.

Everyone has individual needs regarding travel, and it would be valuable to contact your Haemophilia Treatment Centre a few months before departure to plan ahead.

• Talk to your Haemophilia Centre beforehand if you are travelling interstate or overseas. They can help you prepare depending on your individual situation. They can also advise on documentation, medication and travel insurance
• Discuss with your Haemophilia Centre if you need to take treatment with you
• You may not need them, but just in case, find out the contact details of Haemophilia Centres along your route
• You will need to obtain travel insurance for overseas travel
• Consider telling your travelling companions what to do to help you in case of an emergency
• With airplane and overseas travel you may need further documentation to carry medication and treatment equipment through security and customs – talk to your Haemophilia Centre about this well in advance and allow plenty of time to prepare the documentation.

Useful travel web sites:

Smarttraveller – Australian Government. Dept of Foreign Affairs and Trade
Australian Haemophilia Treatment Centres
World Federation of Hemophilia Global Treatment Centre Directory
Australians Overseas - Australian Government. Dept of Human Services