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Hemophilia (New Diagnosis)

Hemophilia is a genetic disorder that occurs in all races. In hemophilia, the blood does not clot normally. This may cause excessive bleeding (internal or external) after injury. Sometimes internal bleeding occurs without obvious injury.

The natural way the body stops bleeding is to plug the hole with platelet cells. Platelets combine with clotting factors (proteins) in the blood to make a strong clot. Persons with hemophilia disease do not have enough clotting factor [(VIII (eight) or IX (nine)]. Therefore, blood clots may not be strong enough to stop bleeding. The severity of the disease depends on the how much clotting factor is missing.

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

Joints are a common place for internal bleeding. This usually involves the knee, elbow, ankle, shoulder or wrist. Repeated bleeding into the joint can cause permanent damage. Learn the symptoms of joint bleeding. Seek prompt medical attention if this occurs.

HOW HEMOPHILIA OCCURS

If a mother has the hemophilia gene, there is a 50% chance she will pass the gene to her son or daughter. Boys with the hemophilia gene develop some form of the disease and usually have problems with excess bleeding. Girls with the hemophilia gene usually do not have bleeding problems. But, girls are carriers and when they have children, they can pass the gene to their sons. Therefore, teenage girls who have a family history of hemophilia should have genetic testing done to know if they are a carrier.

Home Care:

PAIN MANAGEMENT:

  • Use acetaminophen (Tylenol) for mild pain.

  • Do not take any product that contains aspirin. This will worsen your tendency to bleed.

  • Do not use ibuprofen (Motrin, Advil, and others) or naproxen (Aleve, Naprosyn and others) unless advised to do so by your doctor.

  • Use prescription pain medicine only as prescribed. Overuse of narcotics may lead to addiction.

  • In the case of a joint bleed, apply an ice pack 20 minutes at a time every 2 hours for joint pain. Limit joint movement.

ACTIVITY:

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

Physical activity should be restricted according to severity of the disease.

  • Solo sports such as swimming, running, bicycling are okay for those with mild disease.

  • Team sports such as soccer, basketball or baseball carry more risk of injury and should be avoided by those with moderate to severe disease.

  • Heavy contact sports such as wrestling, football and hockey are dangerous for all those with hemophilia and should be avoided.

Follow Up

with your doctor for regular checkups every 6-12 months. Young women who want to have children and who have family members (men or women) with hemophilia, should have genetic testing. All those with hemophilia disease should receive recommended vaccinations, especially hepatitis A and B. Inform doctors and dentists that you have hemophilia before any surgical procedure or tooth extraction is done.

Get Prompt Medical Attention

if any of the following occur:

  • Any serious physical injury

  • Gum bleeding that won’t stop (usually in teething children)

  • Bleeding from the skin not controlled by constant direct pressure for ten minutes

  • Joint pain or swelling (usually knee, elbow, ankle, shoulder, wrist)

  • Muscle pain or swelling (usually thigh, calf or forearm)

  • Head injury (whether or not you are knocked out)

  • Severe headache with nausea or vomiting

  • Seizure, unexpected drowsiness or confusion

  • Severe backache, paralysis of an arm or leg

  • Nosebleeds that do not respond to pinching the nose for 10 minutes

  • Blood in the urine (bright red or dark color)

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

  • Jaundice (yellow eyes or skin), right upper abdominal pain or severe nausea and loss of appetite (signs of hepatitis)

 

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