Yes. Certain drugs affect the way platelets plug holes in blood vessels. A person with VWD should never take drugs containing:
- aspirin (ASA) and other drugs containing aspirin (Alka-Seltzer, Anacin, Aspirin, Bufferin, Dristan, Midol, 222, to name just a few)
- non-steroidal anti-inflammatory drugs (indomethacin, ibuprofen and naproxen), unless prescribed by a physician knowledgeable about VWD
- blood thinners such as warfarin or heparin.
Drugs containing acetaminophen (Tylenol) can be used for fever, headaches and minor aches and pains. However, large doses beyond the levels prescribed on the label should be strictly avoided. They can cause damage to the liver, especially in people who are hepatitis C – positive.
A new generation of anti-inflammatory drugs, called Cox-2 inhibitors, is now on the market. These drugs do not affect blood clotting, and seem to cause less irritation to the stomach. Celebrex is one of the brand names.
People with VWD can travel wherever they please.
Following a few simple tips can make travelling even more relaxing:
- Find out from the bleeding disorder treatment centre the names, addresses and phone numbers of treatment centres along the route.
- Take along up-to-date written medical information, including:
- the exact VWD diagnosis
- the exact prescription for desmopressin or factor concentrates, or other medication
- the name and phone number of the treatment centre where you are known.
These papers could also prove useful at border crossings if customs officials become suspicious of the drugs, needles and syringes you are carrying.
- Take along the CHS Travel Card that contains information about how to access care and treatment when away from home. Among other things, and especially to help globetrotters, the wallet card contains 16 key phrases in English, French and Spanish that can be used in an emergency situation. To obtain a copy of the travel card, please contact the CHS.
- Make sure your, or your family member’s, MedicAlert bracelet is up to date.
- If you, or your family member, self-infuses desmopressin or factor concentrates, make sure you have more than enough for the whole trip. Check that you have all the supplies (needles, syringes …) you need.
- If you do not self-infuse, talk to the nurse coordinator at your bleeding disorder treatment centre about the possibility of carrying along a supply of desmopressin or factor concentrate. These products are not available everywhere.
- If you do not want to carry these products with you, find out before you leave where they are available.
- Make sure you have a cooler to keep the products at the right temperature.
- Find out if your insurance coverage applies in the province or country you are visiting. If not, take out special travel insurance.
- When travelling by air, bus or train, always keep your medication with you. NEVER check it.
Yes. Canadian bleeding disorder treatment centres provide FactorFirst cards to many of their patients. The FactorFirst card contains basic information on treatment of bleeding disorders, specific information on an individual’s particular condition, and contact information for the person’s treatment centre. If you don’t have one, ask about it at your treatment centre.
It is also recommended that a person with VWD wear a MedicAlert bracelet or necklace. Von Willebrand disease is not well known and not easily diagnosed. In the case of an injury or other emergency, the FactorFirst card and MedicAlert bracelet will be very helpful to medical personnel.
A person with VWD should always let medical personnel know that he/she has a bleeding disorder. As the person with VWD is very likely to be more knowledgeable about the disease than these non-specialists, he/she should not hesitate to inform them.
Most importantly, he/she should insist on adequate treatment to control bleeding in the event of a serious injury, or surgery. This may mean refusing consent for a dangerous surgical procedure. Medical personnel should be told to get in immediate contact with a bleeding disorder treatment centre for advice concerning VWD.