17709 Von Willebrand Disease

Overview

Von Willebrand disease (vWD) is an inherited bleeding condition. People with it have low levels or a defective version of a protein called von Willebrand factor, which helps blood stick together to form clots. This means they may bleed longer than usual after an injury, have frequent nosebleeds, or heavy periods.

Yes. It is estimated that around 1 in 100 to 1 in 1,000 people have it, though many have such mild symptoms that they never get diagnosed.

It affects people of all ethnic backgrounds and both sexes. Because it is passed down in families, people who have a parent with the condition may inherit it. Women are more likely to notice symptoms because of heavy periods and childbirth.

Symptoms

Common symptoms

• Easy bruising for no clear reason
• Nosebleeds that last a long time or come back often
• Bleeding that takes a long time to stop after a cut or scrape
• Heavy, prolonged, or painful menstrual periods
• Bleeding after dental work or surgery that is hard to control
• Bleeding from the gums after brushing or flossing

Symptoms in children

• Frequent or lengthy nosebleeds
• Bruising that seems larger than expected after small bumps
• Bleeding for a long time from a pierced ear or after losing a baby tooth

Symptoms in older adults

• Bleeding that starts up again days after surgery or a procedure
• Easy bruising on the arms and legs
• Unexpected bleeding while taking a blood-thinning medicine

Causes

Main causes

• A change (mutation) in the VWF gene, which is inherited from one or both parents
• A gene variant that causes the body to make too little von Willebrand factor, or make a faulty version of it

Risk factors

• Having a parent or sibling with von Willebrand disease
• As people grow older, bleeding problems can sometimes become more noticeable, especially if they take medicines that affect clotting

When to see a doctor

See a doctor urgently if:

• Call your local emergency number right away if you have bleeding that will not stop, bleeding in the head, or any sign of internal bleeding.

Book a routine appointment if:

• Make an appointment with your GP if you often have nosebleeds, easy bruising, or very heavy periods.
• Be sure to mention if you have a family history of bleeding problems before any surgery or dental procedure.

Diagnosis

Von Willebrand disease is diagnosed with blood tests. Your GP will usually refer you to a specialist doctor called a haematologist (a blood specialist) to confirm the diagnosis and find out which type you have.

Tests that may be done

• A blood test to measure the level and activity of von Willebrand factor
• A test to measure factor VIII, another clotting protein that often is lower in VWD
• In some cases, repeat tests are needed because levels can vary from day to day

What to expect at your appointment

The specialist will ask about your bleeding history, your family’s health, and may do a quick physical exam. Once a diagnosis is made, they will work with you to create a personal treatment plan and give you an alert card to show healthcare providers.

Treatment

Treatment for von Willebrand disease depends on the type and severity of the condition. Many people only need treatment during operations, after injuries, or for heavy periods. Others take medicines regularly to keep bleeding under control.

Self-care at home

• For nosebleeds, sit forward, pinch the soft part of your nose for 10 minutes, and breathe through your mouth.
• Use ice packs on bruises or bleeding areas.
• Tell all your healthcare providers, including your dentist, that you have VWD before any procedure.
• Check with your pharmacist before taking any over-the-counter medicine, as some common pain relievers can increase bleeding.

Medical treatments

Treatments may include medicines that help the body release more of its own clotting protein, replacement clotting protein given by injection, and medicines to reduce heavy menstrual bleeding or bleeding after dental work. A specialist will prescribe the right plan for you and adjust it as needed.

When is surgery considered?

If you need surgery or an invasive dental procedure, tell your care team in advance. A haematologist will plan how to reduce bleeding risk, which may include using a medicine to raise your clotting factor levels before and after the procedure.

Living with this condition

With von Willebrand disease, routines like brushing your teeth and playing sports are usually still possible. You may need to take a little extra care — for example, care with activities that cause frequent knocks, and always keeping a nosebleed plan in mind.

Lifestyle tips

• Carry a card or wear a medical alert bracelet that says you have VWD.
• Avoid medicines that can thin the blood (such as some common pain relievers) unless a doctor says they are safe.
• Let coaches, teachers, and employers know if a bleeding time could be a problem and when they should get help.

Diet and exercise

There are no foods that cure VWD, but eating a balanced diet with iron-rich foods (like leafy greens, beans, and lean red meat) can help keep your energy up, especially if you have heavy periods. Exercise is encouraged — just talk to your doctor about which contact sports are safe for you and how to protect yourself from injury.

Mental health and emotional wellbeing

Living with a bleeding disorder can sometimes cause worry, especially about injuries, surgery, or periods. It is normal to feel anxious at times. Talking to your doctor, a counsellor, or a support group can really help.

Prevention

You cannot prevent the inherited form of von Willebrand disease because it is carried in your genes. However, you can prevent many of the problems it causes by getting a proper diagnosis and planning ahead for any procedure or injury.

Vaccines

People with VWD can have their usual childhood and annual vaccines. Tell the nurse or doctor giving the injection so they can be extra careful with the needle.

Screening programmes

If you have a family member with VWD, a blood test can check whether you have the condition. If you are planning a family, a genetic counsellor can explain the chances of passing it on.

Complications

If left untreated

• Bleeding into joints or muscles, which can cause pain and swelling (more common in severe VWD)
• Anaemia from frequent or heavy bleeding
• Serious blood loss after surgery or a major injury
• Very rarely, bleeding inside the brain

Long-term outlook

The outlook for most people with von Willebrand disease is very good. With a diagnosis, good medical care, and sensible planning, most people can enjoy a normal life span and do the things they love. Your healthcare team is there to help you stay safe and well.

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