What is Hemophilia?

When a blood vessel in a healthy body gets injured, blood clotting helps it heal. Cells and proteins combine to form a clot over the injury so that the bleeding stops. Eventually, the clot remodels and the vessel heals, and the body moves on to the next challenge.

Hemophilia is different. When a person with hemophilia injures a blood vessel, the blood doesn’t clot as quickly as it should. They may also have internal bleeding—which is bleeding inside of the body. For example, if they run into something or get tackled in a football game, the impact can cause the joints to bleed. Or if the person needs surgery, they might have unusually heavy bleeding afterward.

Hemophilia can range from mild to severe. Excessive bleeding can be seen in patients with mild hemophilia, as well. Excessive bleeding can cause damage to joints, tissues and even organs.

About 400 babies are born with hemophilia each year in the U.S., so it’s pretty rare. It almost exclusively affects males, but there are rare cases of females with hemophilia.

The ABCs of Hemophilia

If you’re raising a child with hemophilia, you’ve heard the phrase “clotting factor” a lot. That’s the term for the protein that blood needs to clot normally. A child with hemophilia doesn’t have enough of one particular clotting factor, or it’s missing entirely.

There are three types of hemophilia—A, B and C.

• Hemophilia A occurs when the body doesn’t make enough of factor VIII (8). It’s also the most common type of hemophilia.
• Hemophilia B occurs when the body doesn’t make enough of factor IX (9).
• Hemophilia C occurs when the body doesn’t make enough of factor XI (11).

The Common Symptoms of Hemophilia

Hemophilia can cause many symptoms, including: 

• Pain or swelling in joints
• Nosebleeds
• Excessive bleeding after dental work
• Large or unexplained bruises

Diagnosis

Hemophilia is often diagnosed soon after a baby is born. For example, if you have a family history of hemophilia, your child might be tested right away. Or a test might be run if your child is showing signs of  excessive bleeding after circumcision.

However, kids can be diagnosed later, particularly if they have a mild case. If your child’s doctor suspects hemophilia, you can come see us at LuskinOIC for testing.

Diagnosis usually involves screening a child’s blood and running some special tests.

A Collaborative Approach to Treatment

At LuskinOIC, our multidisciplinary treatment team includes hematology, orthopedic surgery, physical therapy and social work. We recognize that it’s critical to treat the whole patient, not just the disease.

Together, we’re able to provide the highest quality care to children and adults of all ages who have hemophilia or other bleeding disorders.

Physical therapy is an important part of the treatment of hemophilia. With physical therapy, patients will:

• Strengthen the muscles around their joints
• Learn joint control exercises to keep the bones moving in good alignment

Restorative physical therapy takes place after doctors have already treated and stabilized the joint bleed. The goal of this kind of physical therapy is to increase:

• Motion
• Strength
• Control
• Endurance
• Balance

Living with Hemophilia

Hemophilia isn’t a short-term problem, but with the right planning and prevention, your child’s life can be as rich and happy as anyone else’s.

Knowing how to manage health needs—from assistance at school (or work) to treatment for sudden bleeding—will be critical for staying healthy. Also, knowing how to cope with challenges and advocate for yourself or your child can boost your confidence.

The LuskinOIC Orthopaedic Hemophilia Treatment Center (OHTC) is here to help you and your child every step of the way.