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Living with the disease

The modern treatment alternatives of today allow people with von Willebrand disease to live a more or less normal life. Hence, being a haemophiliac does not mean constantly having to worry about bleedings. External bleedings are seldom the major problem, rather, internal bleedings in, for example, muscles, joints, abdomen and brain can be severe in nature. However, it is important to use common sense, to avoid exposure to unnecessary risk and to, among other things, consider the following:

Exercise and health

Just as exercise is important for everyone in general, persons with increased bleeding risk should have good balance, strength and mobility. Sports and exercise strengthen your muscles, increase your flexibility and decrease the risk of bleedings. By being careful when warming up and planning coagulation factor treatments in connection with exercise, you can participate in most physical activities. However, it is advisable to avoid sports that involve hard physical contact such as boxing or wrestling.

Medical care

It is important to always inform the nursing staff about your increased bleeding tendency when seeking care for any reason. If surgery or other invasive procedure is planned, a coagulation centre in your country should be contacted beforehand. Consider the following:

  • Always carry a bleeding card with you containing information regarding your diagnosis and treatment, including the phone number of your coagulation centre.
  • Avoid drugs containing acetylsalicylic acid (e.g. aspirin). However, drugs containing paracetamol can be taken.
  • Women with VWD need to have a gynaecologist with thorough knowledge of the disease.
  • Always contact your coagulation centre during pregnancy.
  • Vaccinations must be given subcutaneously, since intramuscular administration can cause muscle bleeds.

Parents of children with von Willebrand disease

For parents of children with the disease, it is difficult to find a balance between protecting your children and not over-protecting them. It is important that daycare centres and schools are informed so that activities can be planned accordingly.

Page updated: 2019-02-05