Von Willebrand disease (VWD) is a blood disorder that can be passed down from parent to child through information, known as genes, in the cells. VWD is caused either by not having enough Von Willebrand factor (VWF) or by having VWF that does not work correctly. Von Willebrand factor is a protein that helps the blood form clots to stop bleeding.
VWD is the most common inherited bleeding disorder. Sometimes even though someone has signs of VWD, it is not diagnosed right away. Because of this, I would like to explain some misconceptions about it to increase awareness.
Misconceptions About Von Willebrand Disease
Misconception #1: Only women have VWD
Both men and women can have VWD. Women can have additional signs of this bleeding disorder that include heavy periods and bleeding problems during and after childbirth.
Misconception #2: VWD is rare
Von Willebrand disease is the most common inherited bleeding disorder. It is not considered to be a rare disorder. It is thought that up to 1% of the population may have a low level of VWF.
Misconception #3: Diagnosis for VWD is easy
VWD can be difficult to diagnose. Some signs of VWD are so mild that it might be hard to tell if your child has it. Some people are not diagnosed with VWD until they have a major injury, dental work, or a surgery. Signs of VWD can be similar to other bleeding disorders. The levels of VWF can change in the blood depending on stress or hormones. This makes it harder to get clear test results. It is common for children to need repeat blood tests in order to get an answer.
Misconception #4: There is only one type of VWD
There are three main types of VWD and several subtypes. The different types of VWD vary in severity. Frequency of bleeding can also be different. Type 1 is the most common and mildest form of VWD, which has low levels of VWF.
Misconception #5: Heavy periods can be normal
Having regular, heavy periods is not considered normal. Periods should not last longer than seven days. Changing a high absorbency pad or tampon more often then every hour or two can be a sign of a period that is too heavy. Passing clots larger than the size of a quarter can also be an indicator of heavy menstrual bleeding. If teen girls are limiting their activities while on their periods, it could be a symptom of heavy bleeding.
Some girls and women do not see that their periods are abnormally heavy because there are other women in their family that also have similar periods. Women in the family may have had hysterectomies because of heavy periods. If you think that your teen’s periods may be considered heavy, check with her primary care doctor.
Misconception #6: Most people who have heavy periods have a bleeding disorder
This is not true. There are several causes of heavy periods, including hormonal changes. Over 20% of women who have heavy menstrual periods have a bleeding disorder. Sadly less than 20% of women with heavy bleeding are screened for a bleeding disorder. This means that some women are not diagnosed with a bleeding disorder even though they may have signs of it.
Misconception #7: There is no treatment for VWD
There are treatments available that help to control bleeding in both women and men. There are also treatments to help prevent and control heavy menstrual bleeding.
Our Hemophilia Treatment Center offers comprehensive care to diagnose and treat bleeding disorders. For teens with heavy periods, we offer a Young Women with Bleeding Disorders Clinic that combines pediatric hematology and adolescent gynecology specialties into a single clinic.