Hemophilia, New Diagnosis

Hemophilia is a bleeding disease. It harms 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 a clear injury.

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

People with severe hemophilia may need shots of the missing clotting factor. These shots help stop bleeding. People with a mild or moderate case often don’t need these shots. But they might need them if they have bleeding that won’t stop. They may also need the shots if they get an internal injury or need surgery.

Bleeding inside the body often occurs at joints. The joints where it's most likely to happen are the:

  • Knees

  • Elbows

  • Ankles

  • Shoulders

  • Wrists

Bleeding into a joint that keeps happening can cause lasting damage. Make sure you know the symptoms of joint bleeding. 

Bleeding can also occur in other parts of your body. You may have it in places like the bowel, bladder, or a muscle. Get care right away if you or your child has any symptoms of bleeding.

How hemophilia occurs

Hemophilia is passed down through families. If a woman has the gene for the disease, she has a 50% chance of passing the gene on to her child. Boys with the gene get some form of the disease. They often have bleeding problems. Girls with the gene often don’t have such problems. But they are carriers of the gene. When they have children, they can pass the gene on. Teen girls who have the disease in their family should have genetic testing. This testing can find out they are a carrier.

Home care

When caring for yourself at home:

  • Use acetaminophen for mild pain.

  • Don’t take anything that has aspirin in it. Aspirin makes it more likely that you will bleed.

  • Don’t use nonsteroidal anti-inflammatory drugs (NSAIDs) unless your healthcare provider tells you to do so. These include ibuprofen and naproxen.

  • Use prescription pain medicine only as you were told. Taking a lot of opioid medicines may lead to addiction.

  • If you have bleeding in a joint, put an ice pack on it. Ice it for 20 minutes at a time. Do this every 2 hours. Try not to move that joint.

General care

You need to keep up your strength. This helps protect your joints from injury and internal bleeding.

Choose activities based on your disease:

  • Solo sports such as swimming, running, and bicycling are OK if you have mild disease.

  • Team sports carry more risk for injury. These include soccer, basketball, or baseball. Don't do these if you have moderate to very bad hemophilia.

  • Don't do heavy contact sports. These include wrestling, football, or hockey. They are not safe for people with hemophilia.

Follow-up care

  • See your healthcare provider for checkups every 6 to 12 months.

  • Talk with your provider about genetic testing.

  • Make sure you get any vaccines that your provider advises. This includes shots for hepatitis A and B.

  • Tell your healthcare providers and dentists that you have hemophilia. Make sure you do so before having surgery or getting a tooth taken out.

  • Learn the signs and symptoms of bleeding. Know what to do if you have bleeding. Plan ahead for any surgeries.

When to call your healthcare provider

Call your healthcare provider right away if you have any of these:

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

  • Bleeding from the skin that doesn’t stop after putting pressure on it for 10 minutes

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

  • Pain or swelling in smaller joints, such as the calf, or forearm

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

  • Blood (bright red or dark) in your urine

Call 911

Call 911 or get care right away if you have any of these:

  • Head injury, even if you are not knocked out

  • Very bad headache with nausea or vomiting

  • Seizure

  • Feeling suddenly sleepy or confused

  • Very bad backache or paralysis of an arm or leg

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

  • Bleeding in the eye

  • Possible bleeding in your belly

  • Any bleeding or swelling in your neck or throat that could block your breathing

  • Muscle pain or swelling in the thigh

  • Joint pain or swelling in the hip

  • Any major injury or bleeding

  • Bleeding that doesn't stop with home care

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