What Is Von Willebrand Disease?

Von Willebrand Disease is an inherited bleeding disorder caused by either a deficiency or dysfunction of von Willebrand Factor (VWF), a protein that plays a critical role in helping blood clot properly.

When VWF is absent, reduced, or not functioning correctly, the body can struggle to stop bleeding effectively.

There are three main types of VWD:

Reason 1: Many Symptoms Are Mistaken For “Normal”

One of the biggest barriers to diagnosis is that many symptoms of VWD are common and often viewed as normal.

People with VWD may experience:

• Frequent nosebleeds
• Easy bruising
• Bleeding gums
• Heavy menstrual bleeding
• Prolonged bleeding from cuts
• Excessive bleeding after surgery or dental work
• Bleeding after childbirth

Individually, these symptoms may not appear alarming.

A person who has always bruised easily may simply assume that is how their body works. Someone with heavy periods may believe that their experience is normal because it has been that way since adolescence.

When symptoms have existed for most of a person’s life, there is often no reference point to suggest something is wrong.

Reason 2: Women Are Frequently Diagnosed Later

Research consistently shows that women experience significant delays in diagnosis.

Heavy menstrual bleeding is one of the most common symptoms of VWD, with studies showing that the majority of women with the condition experience abnormal menstrual bleeding.

Unfortunately, heavy periods are often normalised.

Women may be told:

• “Some women just bleed more heavily.”
• “It’s part of getting older.”
• “It’s hormonal.”
• “It’s stress.”

While these explanations may sometimes be correct, they can also delay investigation into underlying bleeding disorders.

Many women are not referred for specialist testing until years later, often after significant complications such as severe anaemia, multiple medical interventions, excessive bleeding during childbirth, or surgery-related bleeding.

Reason 3: Symptoms Can Be Mild And Intermittent

Unlike severe bleeding disorders that often become apparent during infancy or childhood, many cases of VWD are relatively mild.

Someone with Type 1 VWD may experience only occasional symptoms.

A person might go years without a significant bleeding episode and only discover they have VWD after:

• A wisdom tooth extraction
• Major surgery
• Childbirth
• A serious injury

This means many individuals do not come to medical attention until adulthood.

According to the UK’s Haemophilia Society, people with Type 1 and some forms of Type 2 VWD may not experience significant day-to-day bleeding problems, making delayed diagnosis common.

Reason 4: Many Healthcare Professionals Rarely Encounter VWD

Although VWD is the most common inherited bleeding disorder, individual healthcare professionals may see very few cases during their careers.

General practitioners are experts across a vast range of conditions and cannot be expected to recognise every rare presentation immediately.

The challenge is that VWD symptoms often overlap with many more common conditions.

For example:

Unless the pattern of symptoms is recognised, the possibility of an inherited bleeding disorder may not be considered.

Reason 5: There Is No Single Test For VWD

Many people assume there is a simple blood test that can confirm or rule out Von Willebrand Disease.

In reality, diagnosis is much more complicated.

A diagnosis usually involves:

• Detailed personal bleeding history
• Family history assessment
• Multiple laboratory tests
• Specialist interpretation

Laboratory investigations may include:

• Von Willebrand Factor antigen levels
• Von Willebrand Factor activity tests
• Factor VIII levels
• Additional specialised clotting studies

International diagnostic guidelines acknowledge that accurate diagnosis presents numerous challenges and requires careful interpretation of multiple test results.

Reason 6: Von Willebrand Factor Levels Naturally Fluctuate

One of the most frustrating aspects of VWD diagnosis is that test results can change over time.

Von Willebrand Factor levels are affected by:

• Stress
• Exercise
• Illness
• Infection
• Pregnancy
• Hormonal changes
• Anxiety

As a result, a person may have blood levels that appear normal on one occasion and abnormal on another.

The UK’s Haemophilia Society notes that diagnostic testing often needs to be repeated because VWF levels naturally fluctuate and can be influenced by a range of everyday factors.

This means patients may require multiple rounds of testing before a diagnosis can be confirmed.

Reason 7: Family History Is Not Always Obvious

Because VWD is inherited, family history can provide important clues.

However, this is not always straightforward.

A family may simply assume that frequent nosebleeds, easy bruising, or heavy periods are normal because multiple relatives experience the same symptoms.

In some cases, previous generations may never have been diagnosed.

As a result, important warning signs can be overlooked.

It is not uncommon for one family member’s diagnosis to eventually lead to the identification of several relatives with the same condition.

The Impact Of Delayed Diagnosis

Delayed diagnosis is not merely an inconvenience.

Research suggests that prolonged delays can be associated with increased healthcare interventions and poorer outcomes. In women, diagnostic delays have been linked to a greater likelihood of hysterectomy and other gynaecological procedures.

Without a diagnosis, individuals may experience:

• Unnecessary anxiety
• Repeated emergency visits
• Iron deficiency anaemia
• Missed educational or work opportunities
• Increased surgical risks
• Complications during pregnancy and childbirth

Perhaps most importantly, people may spend years believing their symptoms are something they simply have to live with.

When Should You Seek Further Investigation?

You should consider discussing the possibility of a bleeding disorder with your healthcare professional if you experience several of the following:

• Heavy periods that interfere with daily life
• Frequent or prolonged nosebleeds
• Excessive bruising
• Bleeding gums without obvious cause
• Excessive bleeding after surgery or dental treatment
• A family history of bleeding problems
• Persistent iron deficiency anaemia without a clear explanation

The more bleeding symptoms that occur together, the more important it becomes to seek specialist advice.

Moving Towards Earlier Diagnosis

Awareness of Von Willebrand Disease is improving, but significant challenges remain.

The good news is that healthcare professionals now have access to clearer diagnostic guidelines, improved laboratory testing, and better understanding of how VWD presents in different populations.

Early diagnosis can help individuals access appropriate treatment, plan safely for surgery and childbirth, reduce complications, and improve quality of life.

Most importantly, it can provide answers after years of uncertainty.

For many people living with unexplained bleeding symptoms, understanding the cause is the first step towards managing it effectively.