Hemophilia, New Diagnosis
Hemophilia is a type of bleeding disorder 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 it may be from a wound visible on your skin. Sometimes internal bleeding happens without a clear injury.
The normal way your body stops bleeding is to plug the injured site 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 factors. 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.
Bleeding inside the body often occurs at joints. The joints where it's most likely to happen are the:
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Knees
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Elbows
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Ankles
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Shoulders
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Wrists
Bleeding into a joint that keeps happening can cause lasting damage. Make sure you know the symptoms of joint bleeding such as joint pain, warmth, and swelling.
Bleeding can also occur in other parts of your body. You may have it in places like the bowel, bladder, or a muscle. These may cause symptoms, such as blood in the urine or bowel movements, black tarry stools, blood in vomit, or vomit that looks like coffee grounds, muscle pains or spasms, and tingling or bubbling feeling. In severe cases, bleeding may occur in the brain. This can be life-threatening and cause symptoms, such as severe headache, vomiting, double vision, and difficulty staying awake. Get care right away if you or your child has any symptoms of bleeding.
How hemophilia occurs
Hemophilia is usually inherited (passed down from parent to child through families). It is inherited in an X-linked recessive pattern. This means that the abnormal gene causing hemophilia is present on the X chromosome. This is one of the two sex chromosomes. Males have only one X chromosome (the other being the Y chromosome) while women have two X chromosomes.
Females with the abnormal gene often don’t have bleeding problems. But they are carriers of the abnormal 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 whether they are a carrier. Rarely, hemophilia may be acquired (not inherited). It is caused by the development of autoantibodies against one of the clotting factors.
Home care
When caring for yourself at home:
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Use acetaminophen for mild pain.
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Don’t take anything that has aspirin in it. Aspirin makes it more likely that you will bleed.
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Don’t use nonsteroidal anti-inflammatory drugs unless your healthcare provider tells you to do so. These include ibuprofen and naproxen.
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Use prescription pain medicine only as you were instructed. Frequent use of opioid pain medicines carries the risk of developing physical dependence and substance use disorders like addiction..
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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 the affected joint.
General care
You need to keep up your strength. This helps protect your joints from injury and internal bleeding.
Choose activities based on how bad your disorder is:
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Solo sports, such as swimming, running, and bicycling are OK if you have mild disease.
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Team sports carry more risk for injury. These include soccer, basketball, or baseball. Don't do these if you have moderate to severe hemophilia.
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Don't do heavy contact sports. These include wrestling, football, rugby, or hockey. They are not safe for people with hemophilia.
Follow-up care
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See your healthcare provider for checkups every 6 to 12 months. Or as advised by your provider.
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Talk with your provider about genetic testing.
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Make sure you get any vaccines that your provider advises. This includes shots for hepatitis A and B.
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Tell your healthcare providers and dentists that you have hemophilia. Make sure you do so before having surgery or getting a tooth taken out.
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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:
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Gum bleeding that won’t stop. This may happen in young children who are teething.
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Bleeding from the skin that doesn’t stop after putting pressure on it for 10 minutes
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Joint pain or swelling. This is often the knee, elbow, ankle, shoulder, or wrist.
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Pain or swelling in smaller joints, such as the calf, or forearm
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Nosebleeds that don’t ease after pinching the nose for 10 minutes
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Blood (bright red or dark) in your urine, stools, or vomit
Call 911
Call 911 or get care right away if you have any of these:
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Head injury, even if you are not knocked out
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Very bad headache with nausea or vomiting
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Seizure
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Feeling suddenly sleepy or confused
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Very bad backache or paralysis of an arm or leg
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Blood (black or red) in the stool or vomit
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Bleeding in the eye
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Possible bleeding in your belly
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Any bleeding or swelling in your neck or throat that could block your breathing
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Muscle pain or swelling in the thigh
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Joint pain or swelling in the hip
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Any major injury or bleeding
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Bleeding that doesn't stop with home care