Coping with the diagnosis
Learning you or your child has VWD can put you through a range of different emotions. For some, it inspires fear and anxiety while for others, being able to put a name to symptoms they’ve lived with for years can be a tremendous relief. Parents may feel guilty to learn their child has inherited a genetic disease. All these feelings are normal, and are likely to change over time as you learn more about the condition and the impact it will have on your life.
Talking to others—friends, parents, healthcare professionals, and other people with VWD—can be a great comfort. Learning as much as you can about the disorder will also help you feel more confident and soothe your fears. Get in touch with your local patient organization or hemophilia/bleeding disorder treatment centre to ask questions and discuss options. You can also visit our discussion forum to talk to others who are living with VWD.
Staying physically fit
People with VWD should exercise regularly to stay healthy and keep their muscles and joints strong. Doing so can actually help reduce the number of bleeding episodes, especially for people with Type 3 VWD.
People with mild forms of VWD can usually participate in most sports and activities. Some people with severe Type 3 VWD may need to avoid high-risk, contact sports like hockey, football, and skiing, which can lead to serious bleeds.
The specialists at a hemophilia/bleeding disorder treatment centre can assess each individual and make recommendations on which activities are appropriate based on his/her condition.
Who to tell and how
Learning you or your child has a bleeding disorder is nothing to be ashamed of. In fact, certain people in your or your child's life should probably know about the diagnosis, including:
-
Family members should be informed so that they may also be tested, particularly if they have experienced symptoms.
-
Daycare and school personnel should be given information about VWD and how to handle situations that may arise. They should also be able to reach parents at all times, and have the telephone number of the hemophilia/bleeding disorder treatment centre on file. The most common problem encountered at school is a nosebleed.
-
Other people who care for a child with VWD (babysitters, coaches, friends’ parents, etc.) should also have basic information about the condition and how it should be treated. If bleeding is extremely rare, or if the child is old enough to take care of any problems on their own, this may not be necessary.
-
Most people with VWD don’t find it necessary to discuss their condition with their employer. This is often a personal choice and may depend on the type of job a person has and the severity of their symptoms.
Raising a child with VWD
Children with VWD can live perfectly healthy lives. While it is natural for parents to be concerned about their child, it is important not to over-protect them. Children don’t need to be held back from school or other activities because of their bleeding disorder. They should be encouraged to exercise and participate in sports, based on the recommendations of their doctor (children with severe Type 3 VWD may need to avoid certain high-risk sports like hockey and football).
Children should be educated about their disease and how it should be treated from an early age. The more they know about and understand their condition, the better equipped they will be to handle any situation that arises. The staff at the hemophilia/bleeding disorder treatment centre can supply educational materials and other useful information.
Planning for surgery/dental work
Any type of invasive procedure, such as a tooth extraction or major surgery, can cause bleeding in people with VWD.
It is essential that you tell your doctor, surgeon, or dentist about your bleeding disorder. They will need to consult with your hemophilia/bleeding disorder treatment centre to identify potential risks and properly plan the procedure. You may need medication beforehand to help control bleeding and ensure a safe recovery.
Travel tips
When travelling, find the addresses and telephone numbers of the bleeding disorders treatment centres at your destination(s) and bring the information with you.
Also carry information about your disorder, the treatment that has been prescribed, and the name and telephone number of your physician or treatment centre. In emergencies, a medical bracelet or other identification such as the WFH International Medical Card, notifies healthcare personnel of your bleeding disorder.
Medications to avoid
Click here for the list of drugs that can cause bleeding.
Last updated November 2008 |
