A woman putting a tissue to her nosebleed.
Common signs of Von Willebrand disease include nosebleeds that last longer than 15 minutes and easy bruising.

What is Von Willebrand Disease?

Have you ever wondered, “What is Von Willebrand disease?” Well, according to the Center for Disease Control and Prevention (CDC), Von Willebrand disease (WDC) impacts about 1% of the American population. This accounts for about 3.2 million people.

Von Willebrand disease is when the blood does not clot as it should. Individuals with WDC often have decreased levels of the Von Willebrand factor, a protein that aids in the clotting process, or this protein fails to do its job properly.

In healthy individuals, the Von Willebrand factor protein helps platelets stick together, which helps form clots and stops bleeding. With Von Willebrand disease, the clot may take longer to form, leading to excessive, and sometimes life-threatening, bleeding. So, let’s examine this disease a little further. What causes it? How is it diagnosed? What treatment options are available?

4 Treatment and Management Options

While VWD has no cure, treatment can help reduce or stop bleeding that occurs. However, the exact type of treatment you receive depends on the severity of your diagnosis, other medication or conditions you have and how your body has reacted to other treatment methods.

1. Medication

Overall, your doctor may recommend certain medications, such as:

  • Desmopressin (DDAVP). This consists of a hormone that helps control bleeding. It is often given via injection and is frequently the first treatment option for VWD.
  • Oral contraception. These may be recommended to women who experience heavy menstrual bleeds associated with VWD.
  • VWF infusions. For maintaining normal levels of the Von Willebrand protein in the blood, an infusion might be necessary, particularly before a surgical procedure or during a severe bleeding episode.
  • Clot-stabilizing medications. These may include aminocaproic acid and tranexamic acid to help stop bleeding.
  • Topical applicants. Certain medications can also be applied directly to the bleeding to help seal the area and avoid excessive bleeding.

2. Lifestyle Changes

Your doctor may further advise on lifestyle changes. They may recommend switching from certain pain relievers that cause blood-thinning, such as ibuprofen, aspirin and naproxen sodium, to a different drug, like acetaminophen.

3. Get a Medical Alert Bracelet

It’s also important that you tell your dentist or any other healthcare provider when undergoing a procedure that you have VWD. Wearing a medical alert bracelet can also ensure others know in the case of an accident or emergency.

4. Stay Active

Additionally, you will want to continue to maintain a healthy lifestyle to support your body and health overall. Stay physically active. Choose nutrient-dense and whole foods over processed and pre-packaged food items. Use caution or avoid activities that can lead to easy bruising, such as football, soccer, hockey, or wrestling.

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What Causes Von Willebrand Disease?

Experts tend to agree that Von Willebrand disease is caused by an inherited abnormal gene. This gene is responsible for regulating the Von Willebrand protein. In fact, most individuals diagnosed with VWD are born with it.

However, there is a type of VWD that develops later in life and is not inherited. This usually happens due to another medical condition, such as autoimmune diseases, or due to certain medications, where the body’s immune system attacks the VW proteins. If VWD arises from medical conditions, it cannot be passed down through a person’s genes.

Often, individuals with Von Willebrand might not know they have the disease since symptoms are frequently mild or non-existent. However, detectable symptoms often include:

  • Excessive bleeding after an injury or dental work.
  • Nosebleeds that do not stop within 10 to 15 minutes.
  • Heavy menstrual periods or long menstrual periods.
  • Blood in stool or urine.
  • Easy bruising.

Many women tend to detect Von Willebrand disease quicker than men due to the symptoms associated with menstruation. These include:

  • Blood clots larger than 1 inch in diameter.
  • Having to change a pad or tampon many times in an hour.
  • Anemic symptoms, like fatigue and shortness of breath.
  • Menstrual bleeding that lasts longer than seven days.

Diagnosing Von Willebrand Disease

For your doctor to diagnose VWD, they will typically start by looking into your family history, determining if other family members have it. They will also examine any medication you are taking. They will then perform a physical evaluation, looking for bruising and recent bleeding. From there, they will order blood tests to determine the number of clotting proteins in the blood.

If your blood tests come back showing lower Von Willebrand protein numbers, your doctor will likely diagnose you with Von Willebrand disease.

In Conclusion

If you currently suspect you have VWD, but you do not have a diagnosis and have an upcoming surgical or dental procedure, it is best to get your blood tests completed before your procedure. It also might be wise to reschedule the procedure to a later date.

For most individuals, VWD does not impact their day-to-day lives. More often, it is important to address or take precautions during certain procedures or if an injury has taken place. Thus, if you have been diagnosed with VWD or suspect you have it, while it is not curable, it is completely manageable and should not interfere with your quality of life.