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Understanding Hemophilia a Guide for Caregivers

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Understanding Hemophilia a Guide for Caregivers Understanding hemophilia A guide for caregivers Hemophilia and other bleeding disorders Hemophilia A or B? What causes hemophilia? There are two types of hemophilia: hemophilia A and Since hemophilia is an inherited disease the gene hemophilia B. The missing clotting factor determines is passed from parent to child. About 80 percent of the type of hemophilia. A person with hemophilia A people (mostly men) with hemophilia have type A, is missing or does not have enough factor VIII. Type while the other 20 percent have hemophilia B.2 If a A, also known as classic hemophilia, is four times as female carries the gene that causes hemophilia, she common as hemophilia B.2 If a person is missing or can pass it on to her children. The type and severity doesn’t have the necessary amount of factor IX, he or of the condition is determined by the affected gene, As a teacher, coach, babysitter, daycare worker or she has hemophilia B, also called Christmas disease. which is passed along to the child. someone who cares for children and adults, it is How is hemophilia What are the signs? important to understand the basics of hemophilia. diagnosed? Symptoms are different for everyone but the most common are: Hemophilia can be mild, moderate or severe, • Abnormal bleeding and bruising easily depending on how much clotting factor is in the • Pain and swelling in muscles and joints Hemophilia affects blood. Severe hemophilia is usually diagnosed Hemophilia is a rare bleeding disorder • Blood in the urine and stool 1 in 5,000 male births.1 during infancy but the mild form may go undetected • Nosebleeds with no cause that causes blood to take a long time until adulthood. A blood test is used to measure • Severe bruising after receiving immunizations the amount of factor VIII or factor IX levels. People as an infant to clot. It happens when the blood is without hemophilia normally have a factor level around • Unusual infant bruising on face, back or stomach 100 percent. However, a level between 50 and 150 missing or does not have enough of a • Delayed healing after an injury percent is considered to be normal as well. protein called clotting factor. A person Family history? Test early. If there is a strong Many women who carry the gene for hemophilia have family history of hemophilia, a newborn should be with hemophilia will not bleed any faster lower than normal levels of clotting factor. Depending tested as soon as possible for the disorder. than a person without hemophilia, but on the severity of her condition, a woman may have abnormal clotting. For example, if her mom was he or she will bleed slower and longer. a carrier and her father had hemophilia, she may experience abnormal clotting as well. However, if The clotting factor gene is found only This type of bleeding disorder most often she inherits a milder form she may only experience on the X chromosome. affects males and is usually passed down symptoms during her monthly cycle or not at all. through families. 1 cdc.gov 2 hemophilia.org 2 | Understanding hemophilia • A guide for caregivers CVS Specialty™ | 3 How is hemophilia treated? How serious is the Your doctor may also prescribe a medication known as an High-risk, full-contact anti-fibrinolytic agent. This drug, commonly called Amicar® It’s important to manage hemophilia by taking steps to bleeding episode? (aminocaprioic acid), slows the normal breakdown of blood clots activities to avoid: stop abnormal bleeding as soon as it starts. The most Minor — Any bleeding that is caught just as it and is helpful for treating oral bleeding. • Boxing common treatment is to infuse the missing factor VIII starts. This type heals quickly and sometimes without or factor IX into a person’s veins to help create a clot. People with hemophilia should avoid drugs that can exacerbate • Rugby much treatment. Most minor bleeds can be treated This is known as factor replacement therapy. bleeding problems, such as aspirin, heparin, warfarin and • Football with basic first aid. Keep in mind that some children nonsteroidal anti-inflammatory drugs (NSAIDs), including such • Wrestling Another type of factor replacement therapy is may not want to admit they are bleeding so take drugs like Motrin, Ibuprofen, and Advil. prophylaxis, which means a person receives an notice if a child is favoring one limb over the other. • Other sports that are infusion of clotting factor on a regular basis to Heavy back packs can also lead to minor bleeds. considered high risk for increase the level of factor VIII or factor IX in his or When is it time to go to the hospital? Major — Any bleeding caused by an injury that head or severe injury her blood. It is generally used for people with severe involves swelling and pain, or any bleeding that cannot Having hemophilia used to mean relying on hospitals and clinics hemophilia. Prophylaxis infusions are generally be stopped on its own. A major bleeding episode each time you needed clotting factor. These days frequent administered on a set schedule and the infusions are includes muscles and joints. This type should always absences from school and work, and long hours spent in most often given in the morning. Safe activities be treated promptly to prevent damage to joints or emergency rooms or clinics can be avoided. With the support of to try: By maintaining a higher level of clotting factor, people other complications. hematologists, hemophilia treatment centers, local and national with hemophilia experience fewer bleeding episodes. hemophilia foundations, and specialized home care providers, • Swimming Severe — A potentially life-threatening injury or While there is no cure for hemophilia, proper treatment like CVS Specialty, people with hemophilia and their families can bleeding that can cause permanent damage or death. • Walking helps ensure that most people will lead full, active lives. learn to recognize bleeding episodes early and infuse factor at A severe bleeding episode may include bleeding from home. Decreasing the amount of time families have to spend in • Golfing surgery or dental procedures, deep muscle bleeding, emergency rooms and clinics has helped to improve quality of • Bicycling Always check with your doctor or bleeding inside the head, abdominal bleeding, or life. Today, children with hemophilia have fewer hospitalizations, pharmacist before taking any medicines. bleeding around the throat or neck. Consult a doctor spend more time in school, are better integrated with peers or visit the ER if severe bleeding occurs. and experience less joint damage when compared to previous Patients should talk to their What is a bleeding episode? generations with hemophilia. CVS Specialty Hemophilia Are there any other Does it hurt? CareTeam about the best medications that can help Living with hemophilia activities in which to A bleeding episode occurs when a person with hemophilia has an injury to the tissues in the body. stop or prevent bleeding? Today, new and improved treatments allow most people with participate, so they can hemophilia to lead normal, active lives. Research has shown that Without the correct amount of clotting factor the clot Before surgery or dental work, people with mild maintain a healthy and being physically active is extremely important for people with falls apart, causing re-bleeding in the injured area. hemophilia are sometimes prescribed a drug called active lifestyle. hemophilia. Exercise can actually reduce or prevent bleeding Minor scrapes usually don’t cause pain or problems, desmopressin acetate (commonly known as DDAVP®). episodes by strengthening the muscles surrounding vulnerable but many bleeding episodes can result in considerable This synthetic hormone stimulates the release of joints. The National Hemophilia Foundation strongly encourages pain if they’re not treated promptly. Immediate existing factor VIII. It can be given through a vein or as regular exercise for people with hemophilia of all ages in order to treatment is the best way to prevent pain and injury. a nasal spray (Stimate®). If you are unsure of a bleed, you should infuse. preserve joint function. Many sports and activities are safe for a person with hemophilia. 4 | Understanding hemophilia • A guide for caregivers CVSCVS Specialty Specialty™ || 5 Your name: Your diagnosis: Your doctor’s name(s): Telephone number(s): Von Willebrand disease The most common symptoms of vWD are: • Bruising easily (vWD) and hemophilia • Increased or prolonged menstrual bleeding vWD is the most common inherited bleeding • Frequent and prolonged nose bleeds disorder. It is caused by a deficiency or defect of • Blood in stool or urine Your nurse’s name(s): Telephone number(s): von Willebrand factor (vWF). Unlike hemophilia, von • Prolonged bleeding after dental work, childbirth, Willebrand disease affects women and men equally. surgery or injury It is named after Eric von Willebrand, the doctor who Early diagnosis of von Willebrand disease is important first described the bleeding disorder. to make sure that the person is treated and can live The signs and symptoms of vWD depend on which a healthy, active life. A simple blood test will allow type of vWD the person has and how serious it is. a doctor to see how much von Willebrand factor Many people have such mild symptoms that they don’t is present. Sometimes people have to be tested a know they have vWD. People who have type 3 vWD couple of times because the von Willebrand factor Emergency number(s): may have all of the symptoms listed in the next column levels in the blood can go higher (for a day or two) and severe bleeding episodes for no reason. These because of exercise, surgery, certain medicines, Your treatment center name: Telephone number(s): bleeding episodes can be fatal if not treated right away.
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