How do you know if you have a bleeding disorder or if you’re at risk for one? What are the symptoms? And how do you get care if you do suffer from one?
Just how common are bleeding disorders? While a “bleeding disorder” signifies any condition in which the body has difficult clotting blood on its own—causing prolonged, abnormal bleeding—the most common disorder is von Willebrand Disease. The condition, in which the blood does not clot properly due to either low-levels of the protein vWD or proteins that don’t function properly, is estimated to affect 1% of the United States population. It’s the most common blood disorder amongst women, with females suffering from the most common types of hemophilia: the hereditary ones. In contrast, there are about 20,000 affected males in the United States in 2017, suffering from hemophilia. So how do bleeding disorders most often manifest themselves in women? Our periods.
“Heavy menstrual bleeding is a pretty common problem,” says Dr. Robert Sidonio Jr., a pediatric hematologist at the Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta. “It’s common particularly in the first couple of years in your period. Typically, it’s related to not ovulating, not having good coordination between brain, uterus, and ovaries. That’s typically a temporary problem but it can cause very erratic, sometimes heavy periods. But rarely, it may also be a signal that there’s an underlying bleeding disorder.”
Blood disorders occur for several reasons. In order for blood to clot, there must be two elements present: blood proteins, called clotting factors, and blood cells, called platelets. When a person starts bleeding, the platelets come together, forming a cluster that plugs up blood; next, the clotting factors join the mass, securing the platelets and keeping the blood from pouring out of the skin.
“What [people with von Willibrand are] missing is one of the critical proteins that helps the cells called platelets stick to the damaged surface. For example, if you get a cut, what happens is the platelets come in immediately and it’s like putting your hand on a wound to stop it from bleeding immediately,” Dr. Sidonio explains. “When you have von Willibrand disease, you have an inability for those platelets to stick together for enough of a period of time to allow that area to heal under it. So a scab is basically the end result of a bunch of platelets that have stuck together because of the von Willibrand factor. Then you have additional clotting factors that occur on top of that. It protects that surface damage and brings the damaged parts together and it’s supposed to stay on long enough to allow it to heal.”
Blood disorders can also be caused by certain medications (also known as anticoagulants), a stunted red blood cell count, or a deficiency in vitamin K.
In order to ascertain whether or not a person has a blood disorder, doctors test blood count, conduct platelet aggregation tests to see if the platelets clump properly, and bleeding time tests, which gauge how long it takes a person’s blood to clot. So how do you know if you’re experiencing one of the red flags of bleeding disorders? There are several symptoms to consider before getting a bleeding work-up.
“Having a heavy period is a big clue,” Dr. Sidonio says. “If you’re a teenage girl or a young woman and you’ve had anemia once or twice in your lifetime but it’s never been identified why, then that’s concerning that you might have an underlying bleeding disorder.”
But, your heavy period shouldn’t be the only red flag you keep an eye out for. Dr. Sidonio continues:
“The other thing is obviously if you have a family history. Then simple things like bleeding – if you had a surgery like tonsils removed or any other minor surgery and there’s been a concern that you took a lot longer to stop bleeding, then obviously that would be a clue. So those clues together make it more likely that you could have an underlying bleeding disorder. Those are definitely enough symptoms to warrant a bleeding work-up, meaning that you should go get labs checked for those disorders, for the common ones.”
The main symptoms of bleeding disorders, typically so, involve blood flow. Do you bruise easily or develop unexplained bruises? Is your period particularly heavy? Do you suffer from nosebleeds? When you bleed, do you bleed a lot, even if it’s a seemingly insignificant cut? If you said yes to all of the above symptoms, you should see a doctor regarding these symptoms, as you might be suffering from a blood disorder. If you are suffering from such medical indicators, consulting a medical professional is crucial, as diagnosis and treatment are essential to improving quality of life.
“I see a lot of patients, a lot of teenage girls, and they say it’s pretty typically to miss one or two days of school or work a month. There’s a huge productivity loss. You’re talking about half the population – half the population menstruates! And so it’s a huge impact on the economy and there’s the personal impact of women having to suffer through excessive, erratic periods. When the periods are heavier, they tend to have more symptoms associated: so worsened cramping. Essentially, we have a large group of women who, for one week out of the month, aren’t able to be productive members of society. They’re suffering because of these symptoms. There is definitely a quality of life issue there.”
Though bleeding disorders are specifically prevalent among men, women are at risk too and unfortunately, we have a lack of education about women’s bleeding disorders working against us. In fact, StepsForLiving.com reports that bleeding disorders in women are “often misdiagnosed or undiagnosed due to a lack of awareness.” Because of misdiagnosis (or a total lack of diagnosis), women can endure subsequent medical issues such as menstruation, pregnancy, and birth complications.
“There needs to be a public health movement about girls understanding what is a normal period. It’s a huge problem,” Dr. Sidonio continues. “Most girls don’t know. We’ll see two to three girls a month who get admitted to the hospital because they’ve had a continuous period for a month or two. For me, I just don’t understand how that can happen.”
If you think you may have symptoms of a blood disorder, visit a doctor. For more information, check out HANDI, the National Hemophilia Foundation’s resource center, at 1-800-424-2634.