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Hemophilia, New Diagnosis

Hemophilia is a condition that affects how your blood clots. It may cause you to bleed too much after an injury. The bleeding can be inside your body. Or the bleeding can be from a wound on your skin. Sometimes internal bleeding happens without an obvious injury.

The natural way your body stops bleeding is to plug the hole with platelet cells. Platelets combine with clotting factors (proteins) in the blood. This makes a strong clot. People with hemophilia disease don’t have enough clotting factor. Their blood clots may not be strong enough to stop bleeding. Hemophilia can range from mild to severe, depending on how much clotting factor is missing.

People with the severe form of hemophilia disease may need regular shots of the missing clotting factor to prevent bleeding. People with mild or moderate disease usually don’t need these shots. But they might need shots if they have bleeding that won’t stop, get an internal injury, or need surgery.

Joints are a common place for internal bleeding. Joints usually affected are the knees, elbows, ankles, shoulders, or wrists. Bleeding into a joint that happens again and again can cause permanent damage. Learn the symptoms of joint bleeding. 

Bleeding can also occur in other parts of your body, such as the bowel, bladder, or a muscle. Seek prompt medical attention if you or your child develops any symptoms of bleeding.

How hemophilia occurs

Hemophilia is passed down through families. If a woman has the hemophilia gene, she has a 50% chance of passing the gene on to her son or daughter. Boys with the hemophilia gene develop some form of the disease. They usually have problems with excess bleeding. Girls with the hemophilia gene usually don’t have bleeding problems. But girls are carriers. When they have children, they can pass the gene on to their children. Teen girls who have a family history of hemophilia should have genetic testing done to find out they are a carrier.

Home care

Follow these guidelines when caring for yourself at home:

  • Use acetaminophen for mild pain.

  • Don’t take any product that contains aspirin. Aspirin makes it more likely that you will bleed.

  • Don’t use ibuprofen or naproxen unless your health care provider tells you to do so.

  • Use prescription pain medicine only as prescribed. Overusing opioid medicines may lead to addiction.

  • If you have bleeding in a joint, put an ice pack on the area for 20 minutes at a time. Do this every 2 hours. Move that joint as little as possible.

General care:

It’s important to keep up your physical strength. This helps protect your joints from injury and internal bleeding.

Choose physical activities based on how severe your hemophilia is:

  • Solo sports such as swimming, running, and bicycling are OK for people with mild disease.

  • Team sports like soccer, basketball, or baseball carry more risk for injury. You should avoid these if you have moderate to severe hemophilia.

  • Heavy contact sports like wrestling, football, and hockey are dangerous for anyone with hemophilia. All should be avoided.

Follow-up care

Follow up with your health care provider for regular checkups every 6 to 12 months. Young women who want to have children and who have family members with hemophilia should have genetic testing. Everyone with hemophilia disease should get recommended vaccines, especially hepatitis A and B. Tell your health care providers and dentists that you have hemophilia before having surgery or a tooth extraction.

Learn the signs and symptoms of bleeding and what to do if bleeding occurs. Plan ahead for any surgeries.

When to seek medical advice

Call your health care provider right away if any of these occur:

  • Any serious physical injury

  • Gum bleeding that won’t stop. This may happen in young children who are teething.

  • Bleeding from the skin that doesn’t stop after constant direct pressure for 10 minutes

  • Joint pain or swelling. This is usually the knee, elbow, ankle, shoulder, or wrist.

  • Muscle pain or swelling. This is usually in the thigh, calf, or forearm.

  • Head injury, even if you are not knocked out

  • Severe headache with nausea or vomiting

  • Seizure or unexpected drowsiness or confusion

  • Severe backache or paralysis of an arm or leg

  • Nosebleeds that don’t ease after pinching the nose for 10 minutes

  • Blood (bright red or dark) in your urine

  • Blood (black or red) in the stool or vomit

  • Yellow eyes or skin (jaundice), pain in your right upper abdomen, or severe nausea and loss of appetite (hepatitis) 

 

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