Bleeding disorders are a group of conditions that result when the body cannot clot properly, leading to excessive or prolonged bleeding. Bleeding disorders can cause spontaneous bleeding, affect various parts of the body, have genetic causes or be acquired, and can lead to complications such as joint damage. They can also require careful planning for procedures or surgeries, including dental work, pregnancies and deliveries.
1. There are different types of bleeding disorders
You may have heard of, or know someone affected by, hemophilia, the most well-known bleeding disorder. There are two different types of hemophilia, and both are caused by low levels of what is known as blood protein factors. These factors 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. Some patients require an infusion of these factors to prevent or stop bleeding.
Another common bleeding disorder is von Willebrand disease, which varies in severity from mild to severe. 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 protecting the factor VIII protein. 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
Bleeding disorders can present in many ways ranging from mild to severe. These symptoms include:
- frequent and/or extended nosebleeds
- bleeding from the gums
- easy bruising
- heavy periods during menstrual cycles
- blood in the urine or stool
If you or your child experience any of these symptoms, see your healthcare provider for further testing. These tests can determine whether you might have concerns for a bleeding disorder and refer you to a hematologist, or doctor specializing in blood-related issues, if necessary.
3. Bleeding disorders can lead to complications
Untreated bleeding disorders can lead to complications including anemia, especially in women with heavy menstrual bleeding. Anemia can cause weakness, lightheadedness, dizziness, shortness of breath, paleness, fatigue or tiredness, and headaches.
Bleeding disorders can also cause bleeding into joints, muscles, and soft tissues. Repeated bleeding into joints, like in hemophilia, can cause pain and lead to joint damage and arthritis. Bleeding to the head, neck or abdomen can be life-threatening due to the potential for internal bleeding.
People with bleeding disorders need to work closely with their doctors to develop a plan for surgeries, dental procedures such as extractions, or pregnancy and delivery to ensure their safety and prevent bleeding symptoms. This may involve pre-treating and/or post-operative treatment with medications to help prevent or control bleeding during these events. It's crucial to discuss any planned medical procedures or pregnancies with a healthcare professional with experience in managing bleeding disorders.
4. How to treat bleeding disorders
There are a variety of treatments for people with bleeding disorders and these treatments continue to evolve. Currently, there are almost 30 different products available to treat bleeding disorders. These include nasal sprays, medication in liquid or pill form, and intravenous (IV) versions of clotting proteins. These medications can be used as needed and for preventive management of bleeding.
There are new medications that can be injected under the skin, making them easier and more convenient to be given at home. Some of the new options also last longer, so people with bleeding disorders can use them less frequently and remain stable.
While we have effective treatment options, currently there is no cure for bleeding disorders. Many bleeding disorders are inherited, meaning they are caused by a mutation in a gene that is passed down from parents to children. There are clinical trials focused on gene therapy to raise factor protein levels in hemophilia and reduce the use of routine factor to prevent bleeding in some patients.
5. People with bleeding disorders can lead active lives with special considerations
Regular exercise and physical activity have many benefits for everyone's overall health and well-being, and those with bleeding disorders are no exception. As with surgeries, dental work, or pregnancy, consult your hematology team before taking up a sport or activity. Your hematologist may recommend avoiding full contact sports like football, hockey, rugby, boxing, lacrosse, rock climbing, wrestling, or jujitsu. By contrast, the safest sports for people with bleeding disorders are usually swimming, walking, soccer, dance and golf. Of course, every individual is unique regarding their bleeding tendency and diagnosis, which is why your specific disease and health need to be taken into consideration when choosing an activity.
Individuals and pregnant women with a known family history of bleeding disorders should discuss genetic testing, carrier status and risk factors with their doctors.
Consult your healthcare provider or hematologist prior to starting any new over-the-counter medications, vitamins or prescriptions, as these can increase the risk of bleeding symptoms in a patient with a bleeding disorder.
If you or a loved one has a bleeding disorder, the Hemostasis and Thrombosis Center at Rhode Island Hospital can help you remain healthy and active while leading a full life. Visit our website or call 401-444-8250 for more information.
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