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Helen CampbellPatient with von Willebrand disease
Country:
 Great Britain |
Content:
- Helen Campbell's Battle with Von Willebrand Disease
- A Lifetime of Bleeding
- A Near-Fatal Hemorrhage
- Von Willebrand Disease Diagnosis
- The Invisible Threat
- Treatment and Management
- A Life-Saving Tool
Helen Campbell's Battle with Von Willebrand Disease
Helen Campbell has spent her entire life battling severe bleeding episodes, almost losing her life on several occasions. But her salvation came not from a miracle cure, but from a simple nasal spray.
A Lifetime of Bleeding
Helen Campbell, a 42-year-old NHS administrator from Leeds, UK, has endured decades of severe nosebleeds and menstrual periods that lasted up to three weeks. The relentless bleeding resulted in severe anemia, leaving Helen constantly exhausted and drained.
Her condition, known as Von Willebrand disease, is a deficiency in a blood protein that helps clotting, causing even minor cuts and grazes to become major bleeds.
A Near-Fatal Hemorrhage
One morning in 2007, a nosebleed was so severe that Helen had to be rushed to hospital for an emergency blood transfusion. Usually, when Helen's nose bleeds while she sleeps on her back, the blood drains down her throat and she wakes just in time as she begins to choke. Despite the terrifying experience, she had become accustomed to it over the years.
However, on this particular occasion, she had been sleeping on her stomach. Her nosebleeds typically resulted in a blood loss of 150-170ml, but when she woke that morning, her bed looked like a scene from a horror movie. Blood soaked through her sheets, the mattress, and even the carpet around her bed.
Helen stumbled to the bathroom, feeling overwhelmingly faint, and collapsed moments later. She had lost over two and a half liters of blood. Doctors said that if she had not woken up when she did, she could have bled to death.
Von Willebrand Disease Diagnosis
Helen was diagnosed with Von Willebrand disease, a relatively common disorder named after the Finnish doctor who described it over 90 years ago. Von Willebrand disease is similar to hemophilia but is caused by a different blood protein deficiency that affects clotting. Unlike hemophilia, which primarily affects men, a significant number of women have Von Willebrand disease. It is estimated that around one percent of the population has the condition, and experts believe that the vast majority – nine out of ten people – remain undiagnosed and do not receive the help they need.
The Invisible Threat
While nosebleeds and heavy periods may seem like minor inconveniences, for Von Willebrand disease sufferers, the risk is life-threatening during surgeries, childbirth, or injuries where doctors unaware of the condition could allow a patient to bleed to death.
Common symptoms include nosebleeds, bleeding gums, easy bruising, and excessively heavy and prolonged periods. Unfortunately, many women dismiss such symptoms, believing that three-week-long periods are normal. Furthermore, not every GP or gynecologist considers Von Willebrand disease as a diagnosis, leaving many sufferers undiagnosed.
Treatment and Management
Experts lament the underdiagnosis of Von Willebrand disease, as effective and accessible treatments exist.
There are three types of Von Willebrand disease. The first two involve low levels of the protein, and while unpleasant, they are not usually life-threatening. Type three, like Helen's, is a much more serious condition where sufferers have no Von Willebrand factor, which is essential for blood clotting. Left untreated, type three Von Willebrand disease can be fatal.
The condition can be diagnosed through blood tests that measure the Von Willebrand factor, requiring multiple tests as results can vary depending on a patient’s activity level, stress, and other factors.
For sudden bleeds or excessively heavy periods, the most effective and convenient solution is desmopressin, a medication that improves blood clotting. It is typically administered as a nasal spray.
A Life-Saving Tool
Helen was two years old when her foster mother first noticed her easy bruising and prolonged bleeding. From age six to 12, she relied on crutches due to bleeding into her joints. Her first period at age 13 was a nightmare, lasting for three weeks and leaving her too weak and dizzy to attend school. At ages 7, 32, and 34, her bleeds were so severe that Helen almost died, requiring blood transfusions and injections of clotting-boosting drugs each time.
But today, she manages her condition herself with the help of a tiny bottle of desmopressin.
