Complications of Hemophilia and How to Prevent Them

Internal bleeding from hemophilia can contribute to complications like joint damage, neurological symptoms, and pseudotumors. Regular checkups and treatment may help prevent these complications.

Hemophilia is a bleeding disorder that causes blood to clot improperly. It occurs due to a lack of special proteins called blood clotting factors.

Hemophilia is relatively rare and typically runs in families, mainly affecting people assigned male at birth. The Centers for Disease Control and Prevention (CDC) estimates that around 33,000 U.S. males have hemophilia.

Keep reading to learn about the potential complications of hemophilia and how to prevent them.

Symptoms of hemophilia

The primary symptom of hemophilia is excessive bleeding, even after minor cuts or injuries. Depending on the type of this condition, other symptoms may include:

• severe bleeding after surgery or dental work
• many large or deep bruises
• pain , swelling , or tightness in your joints due to bleeding in them
• nosebleeds without a known cause
• blood in urine or stool
• heavy menstrual bleeding
• hemorrhaging following childbirth

Internal bleeding

Internal bleeding is one of the most frequent and serious complications of hemophilia. It can occur in muscles and joints, which can cause severe pain and swelling.

Bleeding in the brain is rare but can happen, especially after a head injury. Signs of internal bleeding include :

• unexplained and large bruises
• pain and swelling in muscles or joints
• coughing , vomiting , or urinating blood
• symptoms of shock

If you suspect internal bleeding, seek medical help immediately. Doctors treat internal bleeding with clotting factor concentrates to replace the missing clotting factors .

Regular infusions of these concentrates can prevent severe bleeding episodes.

Joint damage

Joint damage is a common complication of hemophilia due to frequent hemarthrosis (bleeding into the joints).

It usually affects the knees, ankles, and elbows. Frequent bleeding into the joints can cause long-term joint pain and swelling. Eventually, you might need joint replacement surgery.

Regular prophylactic (preventive) treatment with clotting factor concentrates is crucial to prevent joint damage. Physical therapy can also help maintain joint mobility and strength.

Hemophilic pseudotumors

Pseudotumors are a rare but serious complication of hemophilia. They occur when frequent bleeding into a muscle causes a lump or mass to form.

The lump or mass can press on surrounding tissues and bones, leading to pain and other complications. Pseudotumors can grow over time.

Early detection and treatment are key to managing hemophilic pseudotumors. Regular doctor visits and imaging tests can help identify pseudotumors early. Treatment options include surgery and radiation therapy.

Neurological symptoms

Bleeding into the brain or spinal cord can cause you to experience neurological symptoms. These can be life threatening and require immediate medical attention. Symptoms to watch for include:

• sudden, severe headaches
• neck pain and stiffness
• unexplained vomiting
• sudden weakness or numbness in your legs or arms
• vision disturbances
• difficulty speaking or understanding speech

If you experience any of these symptoms, seek emergency medical help. Doctors treat this complication by administering clotting factor concentrates, monoclonal antibody emicizumab ( Helimbra ), and other therapies.

Immune tolerance (inhibitor development)

Some people with hemophilia develop inhibitors, which are antibodies that attack the clotting factors used in treatment. This makes it challenging to manage bleeding episodes because the treatment becomes less effective.

Immune tolerance induction therapy is the primary treatment for inhibitors. This treatment involves regular, high doses of clotting factor concentrates to train your immune system to tolerate them.

Infections from transfusions

Although not common in the United States today, blood transfusions were the primary hemophilia treatment until the 1990s . This therapy can increase the risk of infections, including hepatitis and HIV .

Recombinant (synthetic) clotting factors don’t contain human blood and don’t carry a risk of infection.

Frequently asked questions

What is the most common complication of hemophilia?

The most common complication of hemophilia is bleeding into the joints, leading to joint damage.

How can hemophilia affect a person’s life?

Hemophilia can significantly affect your daily life, from the need for frequent preventive treatments to the risk of bleeding episodes. However, with proper management, many people with hemophilia live active and fulfilling lives.

How long do people with hemophilia live?

With modern treatments and proper care, people with hemophilia can have close to regular lifespans . Early diagnosis, aggressive treatment, and frequent monitoring are key to preventing serious complications.

However, racial disparities in hemophilia treatment continue to persist. A 2023 U.S. study found that Black males with hemophilia live, on average, 12 years less than white males with the condition.

Takeaway

Living with hemophilia requires careful management to prevent and treat complications. Regular doctor appointments, prompt treatment of bleeding episodes, and preventive measures are essential.

By staying informed and working closely with your healthcare team, you can manage hemophilia effectively and maintain a good quality of life. Always consult your doctor for personalized advice and treatment options.