A bleeding disorder is a condition in which your blood cannot clot properly. This can be dangerous and can lead to excessive bleeding. 

1. Different types

You may have heard of, or know someone affected by, hemophilia, the most well-known bleeding disorder. There are actually two different types of hemophilia, and both are caused by low levels of what is known as blood protein factors. These help the body slow down and stop bleeding when there is an injury. For someone with low levels of these protein factors, it takes much longer to stop bleeding.

Hemophilia is not the only bleeding disorder. Another, lesser known one is Willebrand disease, which has seven different types. Each subtype involves a different problem with the von Willebrand protein, a large protein that works like glue and helps platelets stick together to form a clot. There are also many different disorders that involve problems with the platelets themselves. Because each type and subtype of bleeding disorder is different, it is important to identify each patient’s specific disorder so it can be treated appropriately.

2. Signs of a bleeding disorder

Many worry that they might have a bleeding disorder because they bruise easily. While this can be one sign of a bleeding disorder, there are usually other symptoms as well. Those include:

  • frequent nosebleeds
  • frequent bleeding from their gums
  • in women, periods that are extremely heavy and last for more than a week at a time
  • blood in their urine or stool

If you experience any of these symptoms, see your doctor. He or she can do further testing to help determine whether you might have a bleeding disorder and can refer you to a hematologist, a specialist in blood disorders.

3. Not all bleeding events are equal

People with bleeding disorders can be at risk for a “spontaneous bleed.” This occurs when bleeding starts on its own without any injury or other cause. Bleeding can happen anywhere in the body. In certain regions, it can cause significant problems because of the organs affected or the amount of blood that can accumulate. These areas are:

  • head or eye
  • abdomen, hip, or thigh
  • throat or neck

Uncontrolled bleeding in any of these regions should prompt urgent medical treatment.

People with hemophilia can bleed into their joints, especially their knees, elbows, and ankles. While these spaces are smaller and pose less risk for severe blood loss, having repeated bleeds in these locations can cause joint damage over time. No matter the location, the goal is always to minimize or prevent bleeding.

4. Special considerations

People who have bleeding disorders can undergo surgeries, have babies, and play sports. However, it is critical that anyone with a bleeding disorder work with their doctor to develop a plan for a surgery or a pregnancy to ensure their safety. This usually involves pre-treating with extra doses of an appropriate medication. The hematology team can communicate with other providers, including surgeons, obstetricians, dentists, and more to share detailed bleeding prevention and treatment plans.

Regular exercise and physical activity have many benefits for everyone’s overall health and well-being, and those with a bleeding disorder are no exception. Consult your hematology team for recommendations of sports to avoid. Those typically include contact sports like football, hockey, rugby, and boxing. By contrast, the safest sports are usually swimming, hiking, walking, and golf. Of course, every individual is unique. That is why your specific disease and overall health need to be taken into consideration when choosing an activity.

5. Treating bleeding disorders

The range of treatments for patients with bleeding disorders is constantly evolving. Currently, there are almost 30 different products available to treat bleeding disorders. These medications include nasal sprays, medication in liquid or pill form, and intravenous (IV) versions of clotting proteins. 

The staff at our Hemostasis and Thrombosis Center (HTC, formerly known as the Hemophilia Treatment Center) is trained to help educate patients and parents of children with bleeding disorders about which medication is best for them. If an IV medication is the most appropriate, the HTC staff can help patients and parents learn how to infuse medications regularly to help prevent and treat bleeds.

Luckily, the field of hemophilia and bleeding disorders is constantly developing new treatments. There are newer medications that can be injected under the skin, making them much easier to give at home. Some of the new products also last longer, so patients can use them less frequently and remain safe from bleeds.

While we have effective treatments, at this time there is no cure. However, many bleeding disorders are hereditary, and can be passed down in families through the genes. As a result, there are numerous clinical trials focusing on gene therapy as a way to cure hemophilia.

If you or a loved one has a bleeding disorder, our Hemostasis and Thrombosis Center team can help you remain healthy and active while leading a full life. For more information, visit our website.

Hemostasis and Thrombosis Center

Rebecca MacDonell-Yilmaz, MD

Dr. Rebecca MacDonell-Yilmaz is a pediatrician at Hasbro Children’s Hospital and is completing her fellowship in pediatric hematology and oncology.