Joint bleeds cause damage to your joints that gets worse over time, causing pain and reducing your range of motion. Eventually, permanent damage can occur. That’s why it’s so important to stay on top of bleeds.

The best way to manage bleeds for yourself or your child is to be prepared. The more you know about how to notice a bleed, the quicker you will be able to treat it. You should also work with your hemophilia treatment center (HTC) to make a plan before bleeding occurs so you’ll know exactly what to do when it does.

Bleeds can happen in or near joints such as the ankles, knees, hips, elbows, and shoulders. It is important to treat these bleeds as quickly as possible to stop the pain and bleeding and prevent a more serious bleed that is difficult to control. The more blood there is in the joint, the more damage it can cause.

Use R.I.C.E. to treat joint bleeds.

How do joint bleeds affect mobility?

A bleed can occur when a joint is stressed. This type of bleed is called an acute bleed, or hemarthrosis. When the same joint experiences repeated bleeding, the lining around what’s called the synovial membrane may become swollen and thick. This condition, known as “chronic synovitis,” can limit joint motion.

Long-term effects on joints

If bleeds continue, the joint’s bone surface starts to wear away. Rough edges of the bone tear the thickened synovial membrane. This process causes more bleeds and damage. Eventually, the joint gets bigger and may change shape or move slightly. When joint changes make it harder to move without pain or other problems, a person has progressive arthritis.

Once a joint is severely damaged, the body may not be able to heal itself. You may lose range of motion. You may even have a fixed joint that you cannot move at all. If range of motion becomes permanently limited, it is called hemophilic arthropathy. You may need to talk to your doctor about your options—including surgery.

Joints no longer healthy? Surgery may be an option.

Some people with hemophilia elect to have surgery to repair joints, relieve pain, and help them keep moving through life. Surgery can lead to less pain and more mobility, but there are risks. Talk with your family and your doctor to decide what’s right for you. Consider these questions:

How often do joint problems get in the way of your daily life?

How much pain do your joints cause?

Do you have insurance?

Can you commit to demanding physical therapy?

What are your personal goals?

Be sure to discuss the risks and benefits of elective surgery with your doctor.