Living with von Willebrand disease

/Living with von Willebrand disease
Living with von Willebrand disease2018-05-14T12:31:23+00:00
In the past, HIV and hepatitis C were transmitted through blood products.

Are blood products safe now?

The blood products recommended to treat VWD today have never been known to transmit HIV, which causes AIDS, or hepatitis B or C. Four different safety measures are used to make VWF concentrate as safe as possible.

  • Blood donors go through a rigorous screening process.
  • Each blood donation undergoes a series of tests to detect HIV, hepatitis A, B and C and other viruses which could be present in blood. If any virus is found, the blood donation is not used.
  • The plasma from which VWF concentrate is made is again tested for the presence of these viruses.
  • During manufacturing, the VWF concentrate is treated to kill any viruses that may have escaped detection.

Despite these safety measures, factor concentrates made from plasma may transmit parvovirus. Parvovirus is a common virus that is not normally dangerous. However, it can, in rare cases, cause miscarriage (spontaneous abortion). (See Conception, pregnancy and childbirth)

The risk of transmitting blood-borne diseases, especially unknown ones, still exists. For this reason, scientists are currently developing VWF concentrates made through recombinant technology, without human plasma. These new products are likely to be available within the next few years.

Are there any vaccines a person with von Willebrand disease should take?

Yes, there are. Hepatitis B can still be transmitted by certain blood products, such as plasma and red cells. The vaccine against hepatitis B is recommended for all people who routinely receive blood or blood products.

In very rare cases, hepatitis A has been transmitted by blood products. Therefore, doctors recommend vaccination against hepatitis A for people who receive blood or blood products. This is especially important for people who are infected with hepatitis C. This is because hepatitis A can be a serious, even fatal, disease for people who have hepatitis C.

If a person used blood products in the past, should he/she be tested for HIV and hepatitis C?

Yes. If a person received blood or blood products in the past, he/she should be tested for HIV and hepatitis B and C.

A bleeding disorder treatment centre can provide counseling before doing the tests. Anonymous testing, which keeps the results confidential, is available.

Are nosebleeds common in von Willebrand disease?

Yes, nosebleeds are the most common symptom of VWD. This is especially true with children.

How can nosebleeds be stopped?

Nosebleeds may be stopped by sitting upright and firmly pinching the widest part of the nostrils together for 10 to 15 minutes. This applies direct pressure to the septum, the cartilage that divides the left and right nostrils. This is the most common site for bleeding. It may be necessary to repeat the procedure a second time. If, after two attempts, the bleeding persists, other treatments may be necessary. The nose can be packed or desmopressin can be taken.

Children should be taught to calm down as much as possible, in the event of a nosebleed.

Some people find that a cold cloth placed on the back of the neck and on the bridge of the nose is helpful in stopping bleeding.

Antifibrinolytic agents (Cyklokapron and Amicar) can be given for 5 to 7 days after the nosebleed to prevent re-bleeding.

Drinking hot liquids and strenuous exercise can cause the nosebleed to re-start. Therefore, it is helpful to avoid hot soup, tea or coffee and avoid lifting or straining for 24 hours after a nosebleed.

When should a doctor be consulted for a nosebleed?

If the pinching procedure does not stop the bleeding, and severe bleeding continues for more than 20 to 30 minutes, a doctor should be consulted.

Can anything be done to prevent nosebleeds?

Yes, there are several easy ways to prevent or reduce the frequency of nosebleeds.

It is important to maintain a certain level of humidity in the house, especially in the person’s bedroom. This is especially important in the winter when heating makes a house much drier. A humidifier is ideal; however, an open bowl of water can also work very well.

Using petroleum jelly (Vaseline) in the nostrils every day can keep the nostrils from drying and cracking.

In some cases, local clotting agents like Fibrin may be needed to prevent bleeding from re-occurring. The personnel at the bleeding disorder treatment centre will be able to help with these treatments.

Cauterizing (burning) the blood vessels in the nose is not usually recommended for people with VWD. A scab forms where the blood vessels are burned. This scab eventually falls off and bleeding can start all over again.

Can a person with von Willebrand disease play sports?

Yes. It is important that all people with VWD engage in regular exercise to keep their muscles and joints strong and their health good. Being in good physical condition can actually reduce the number of bleeding episodes a person has, especially in Type 3 VWD.

Another benefit of regular exercise is the raising of the VWF levels.

A person with VWD will have to find out for himself/herself what physical activities he/she can or cannot do. Many people with a mild disorder participate in all kinds of sports including active sports like soccer and highrisk sports like skiing. People with Type 3 VWD may find these activities lead to serious bleeding.

Children, especially, need to be given the chance to discover what activities they can safely do. It is very important for a child’s development to participate in the same sports as his/her friends. It is natural, of course, for parents to want to protect their children from harm. With VWD, the best way to protect children is to make sure they follow the latest safety guidelines for all children involved in sports: for example, helmets for bicycling, rollerblading, skiing and snowboarding; shinpads and helmet for soccer; and full mask for hockey.

Specialists at the bleeding disorder treatment centre can advise a person of the risks based on an evaluation of his/her condition. However, in the end, the person living with VWD is the best judge of which activities are appropriate.

Will von Willebrand disease affect a child’s ability to attend daycare or school?

No, it shouldn’t. Bleeding in Types 1 and 2 VWD should not keep a child out of school. Occasionally, with Type 3 VWD, a serious bleed into a muscle or joint could keep a child out of school for a short time. However, with prompt treatment, these absences should last no more than a day or two.

What should daycare and school personnel be told about a child with von Willebrand disease?

It is important to give daycare and school personnel the facts about VWD, but not to over-dramatize the disease. Many nurses in bleeding disorder treatment centres are willing to talk to daycare and school personnel. This can help to reassure teachers and daycare workers that VWD can be easily managed.

The most common problem encountered at school will probably be nosebleeds. Children with VWD need to be taught at a young age how to handle their own nosebleeds. If the children are very young, the child’s teacher or daycare worker will need to learn how to handle them. (See Nosebleeds INSERT LINK) As with any blood spill, universal infection control precautions should be practiced.

Some parents provide the school with copies of documentation on VWD that can be placed in the child’s file and follow him/her from grade to grade.

It is important that daycare or school personnel can contact the parents at all times, in case of emergency. In addition, it is helpful to provide the telephone number of the nearest bleeding disorder treatment centre.

Should a child with von Willebrand disease take part in physical education?

Yes. Almost all children with VWD can do the same physical activities as other children. Occasionally, children with Type 3 VWD will be unable to do certain activities or play certain sports. Children with a bleeding disorder know what they can and cannot do on a given day. The gym teacher should let the child choose those activities he/she cannot do. If the gym teacher is overly cautious or, on the other hand, refuses to let the child sit out certain activities, a meeting should be arranged to discuss the issue.

Do the child’s classmates need to know about his/her condition?

No, unless the child wants to educate his/her classmates about VWD, there is no need to inform classmates. After all, a child with VWD just wants to be treated normally.

What do other people need to be told about a child’s von Willebrand disease?

There is no single answer to this question.

It will depend on a number of factors, including:

  • the child’s age
  • the severity of the symptoms
  • the relationship of the person to the child.

In general, people taking responsibility for the child (babysitters, teachers, sports coaches, etc.) need to know what to do in the case of bleeding. If bleeding symptoms are extremely rare, or the child is old enough to take care of any problems himself/herself, informing may not be necessary.

Parents have occasionally been suspected of child abuse when their children with bleeding disorders have been discovered with bad bruises. Being open in talking matter-of-factly about VWD with babysitters, neighbours and others may lessen the chance of this happening.

A person with VWD can do any job.

The very small number of people with Type 3 VWD may find that certain jobs that are extremely demanding physically will take a toll on their joints in the long run.

People with VWD are sometimes refused life insurance. In other cases, they are required to pay higher premiums. Hopefully, as VWD becomes better known by the public and by insurance companies, this situation will change. In the meantime, as different companies have different policies, the best advice is to shop around.

What is the life expectancy for people with von Willebrand disease?

The life expectancy for people with VWD is normal.

What’s more, some researchers are finding that mild VWD could be a health benefit. They explain it this way. Von Willebrand disease makes it more difficult for platelets to stick together. Because of this, people with VWD could have less chance of blood clots blocking arteries (atherosclerosis), and therefore, less chance of heart attacks and strokes.

Can people with von Willebrand disease lead normal lives?

Absolutely! Most people with VWD have only occasional mild bleeding problems. Others bleed more frequently; however, with proper medical care, these bleeding episodes can be controlled.

People with VWD can:

  • exercise, play sports and keep physically fit
  • get an education
  • hold a steady job
  • marry and have children.

What are the best ways to manage von Willebrand disease?

  • Learn all about von Willebrand disease.
  • Find medical care in a centre which specializes in diagnosing and treating bleeding disorders.
  • Live life to the fullest, knowing that von Willebrand disease can be successfully managed.
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