Get to Know Bleeding Severity Levels for Hemophilia
Learn how mild, moderate, or severe hemophilia influences lifestyle choices and medical care.
Your hemophilia doesn’t define who you are. But it has significant implications for how you live your life, from the activities you do to the jobs you take and the places you travel.
The key to understanding how hemophilia affects you is recognizing the severity level of your condition. This is determined by how much of a particular protein — a clotting factor — that you have in your blood to help stop bleeding. Remember, whether you have mild, moderate, or severe hemophilia understanding the severity level of your condition will help influence your lifestyle choices and medical care.
Knowing the severity of your hemophilia is helpful for several key reasons:
- Your health care team can tailor your treatment plan, including the dosage of clotting factor that you need.
- Your health care team can better assess your risk of bleeding complications.
- You can be proactive about preventing complications, by infusing clotting factor and avoiding situations that could cause a bleed, for example.
- You can be empowered to make informed decisions about your care and the management of your condition.
Read more to understand the severity levels of hemophilia and what you can do to better manage your condition.
Mild Hemophilia
People with mild hemophilia have a clotting factor in their blood between 5% and 40% of normal. About 25% of people with hemophilia have a mild form.
You may experience prolonged bleeding after injuries, surgeries, or dental procedures. Many times, mild hemophilia is diagnosed only after one of these events, and sometimes it isn’t diagnosed until adulthood. Women with mild hemophilia may have heavy menstrual bleeding or may hemorrhage during childbirth.
Managing mild hemophilia usually involves treatment with clotting factor when bleeding occurs. With guidance from your hemophilia treatment center, or HTC, you might decide to take factor proactively, before a bleed happens (called prophylaxis).
Moderate Hemophilia
Moderate hemophilia is characterized by having a clotting factor level that is 1% to 5% of normal. About 15% of people with hemophilia have a moderate form.
People with moderate hemophilia may experience prolonged bleeding after injuries, surgeries, or dental procedures and spontaneous bleeds without a known cause. Because bleeding episodes are more frequent — about once a month — it’s possible to develop joint damage over time.
Managing moderate hemophilia usually involves a combination of taking on-demand clotting factor when bleeding occurs and proactive (prophylactic) treatment to increase the amount of clotting factor in the blood.
Severe Hemophilia
If you have severe hemophilia, you have a clotting factor level that’s less than 1% of normal. About 60% of people with hemophilia have a severe form.
With severe hemophilia you will probably experience prolonged bleeding after injuries, surgeries, or dental procedures and have spontaneous bleeds into joints and muscles, usually once or twice a week. Severe hemophilia is diagnosed among many males after circumcision.
Because of the high frequency of bleeding episodes, people with severe hemophilia may develop a joint condition called hemophilic arthropathy as they get older.
Severe hemophilia requires comprehensive care, best received at an HTC, where a team of specialists — including hematologists, nurses, social workers, and physical therapists — can work with you to manage your condition and prevent long-term complications.
Source: National Bleeding Disorders Foundation, HemAware, June 2024