Living With Von Willebrand Disease - Patient's Lounge - Patient Medical Experiences
Updated date:

Living With Von Willebrand Disease

I am not an expert, but I was diagnosed with von Willebrand disease. This is my personal experience living with the disorder.

Von Willebrand Disease (VWD) is an inherited or acquired blood disorder that results in frequent and excessive bleeding.

Von Willebrand Disease (VWD) is an inherited or acquired blood disorder that results in frequent and excessive bleeding.

What Is Von Willebrand Disease (VWD)?

First described in 1926 by Erik von Willebrand, it was first called 'pseudohemophilia' but later became known as vascular haemophilia. This is the most common hereditary coagulopathy or bleeding disorder in humans. It can be congenital, inherited or acquired.

What Causes VWD?

This disorder esults from the deficiency or abnormal function of the von Willebrand factor (VWF), which is a blood clotting factor. This condition can cause excessive bleeding since blood clots take longer to form.

Although von Willebrand disease is said to be a common inherited condition, I am the first in my family to test positive. Only one of my four children, my son, inherited this condition from me

In this article, you will learn how VWD is diagnosed, treated/managed, and affects your life.

Symptoms Of Von Willebrand Disease

Symptoms of VWD can start at any age. Mine started in childhood. Here's a list of the most common ones:

  • Frequent nose bleeds
  • Unexplained bruising on any part of the body
  • Bleeding gums and/or gum disorders
  • Long-lasting bleeding from cuts or other injuries
  • Heavy bleeding during surgery
  • Heavy periods and heavy bleeding after childbirth
  • Risk of bleeding into the stomach, joints and muscles

My Experience Living With VWD

At a young age, I had many nose bleeds that bled for a long time and caused me to lose a lot of blood.

At the age of 18, I had my first child. After birthing and stitching, I continued to bleed internally but this went unnoticed by the medical staff. The internal bleeding started filling what I can only describe as a rugby size ball of blood that was hanging from between my legs.

When I saw and felt this football-size ball of blood, I collapsed. I remember crawling across the ward floor to get help. I was rushed to emergency theatre to have the ball of blood drained and to stop the bleeding. I had to stay in the hospital—sitting on a donut cushion—for ten days. At this point, no one had checked to see if I had a bleeding disorder.

Throughout my life, I have had many problems because I bled a lot. If I cut myself, it would take a long time to stop the bleeding. My legs, arms and stomach were full of bruises even though I knew I had not injured myself. My doctor at the time did not believe that I was bruising spontaneously and did not investigate.

With the birth of my second child and still no diagnosis of a bleeding disorder, I bled out and had to be put on a drip.

I developed pain in my joints and bled into my arms and other areas of my body. I was then diagnosed with Lupus and Fibromyalgia. Finally, a different doctor diagnosed von Willebrand after taking my history and blood tests

I do not take medication for Von Willebrand, but I would gladly take it if I ever needed surgery.

Different Types

Type 1Type 2Type 3Acquired von Willebrand Syndrome (AVWS)

most common and mildest

bleed more frequently and heavier than type1

rarest and most severe

acquired rather than inherited

reduced levels of VFW in their blood

 

very low levels of VWF or none at all

defect in the structure or function of the von Willebrand factor

could be at risk of prolonged heavy bleeding during surgery, after an injury, or after a simple tooth extraction

 

might experience excessive bleeding from the mouth, nose and stomach

usually associated with other underlying causes

 

 

might also experience bleeding into joints and muscles

 

How It's Diagnosed

In order to diagnose this disorder, your doctor will do a series of blood tests to see how your blood clots and the length of time it takes to clot.

These tests might include:

  • Complete blood count (CBC)
  • Activated partial thromboplastin time test (APTT): measures blood clotting ability and length of time to clot
  • Prothrombin time test: measures the blood-clotting ability of each of the factors and identifies which factor is dysfunctional

My Young Son's Experience

At the age of eighteen months, my son started having nosebleeds. They were spontaneous heavy. When he was about four, there were many mornings where I would get up to find his bedroom full of blood. There would be blood all over the bed, bedding, carpet, door and door handle and then all over the bathroom.

My son had so many nose bleeds that he just used to cup his hands around his nose to catch the blood and run to the bathroom to catch the blood in the sink, not realising he was pouring blood all over the place. At first, the doctor said it was normal to have nose bleeds so I changed doctor and got my son tested and tested positive for Von Willebrand.

How Medication Helped Him

At the age of seven, he had a dentist's appointment. He was prescribed Tranexamic acid to take for 3 days leading up to the appointment.

On the day of the appointment which was set for the afternoon, I received a call from the school my son attended. He had an accident and had split his head open. I ran to the school terrified of how much blood he had lost or could lose with his head split open.

When I got to school and saw him sitting there with no blood coming from his injury I was shocked. A very deep cut to his head but no blood loss—all thanks to the medication he had received.

He will only need to take medication before surgery. He has no other symptoms and does not have any unusual bruising on his body.

Treatment of Excessive Bleeding

If you are bleeding often or excessively, your doctor can prescribe a medicine to help.

Here are the three main medicines prescribed that can help stop bleeds:

  • Desmopressin: This drug is available as a nasal spray or injection.
  • Tranexamic acid: This is available in tablet form, mouthwash and injection and is good to take before surgery or tooth extraction.
  • Von Willebrand factor concentrate: available as an injection

These medications can also be used before a procedure or operation to reduce the risk of bleeding. People with severe VWD may need to take them regularly to help prevent serious bleeds.

Important Reminder

It is important to reiterate to your surgeon that you have VWD because I often find that information is not in my notes. When having cancer treatment recently that included a possible surgery, I had to repeatedly tell the cancer consultant and medical staff that I had von Willebrand, but it was not written in my cancer file.

When I tell doctors, nurses or paramedics that I have this disease and that I am a bleeder, they all admit they had not heard of the condition. So, if you are diagnosed keep on telling till they listen.

Do You Have Unusual Bruising or Bleeding?

I have shared my experience of living with von Willebrand and how this blood clotting disorder affected mine and my son's life.

If you are affected by this disorder, please feel free to leave a comment below.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Louise Elcross (author) from Preston on June 06, 2020:

Thank you Pamela, I have found that even the doctor does not know what it is even though it is a common disorder. Thanks for reading and for your comment.

Pamela Oglesby from Sunny Florida on June 06, 2020:

I am not familiar with this disease. It sounds like this is a difficult disease to cope with, Louise. This article explains the disease very well.

Related Articles