Living With Hemophilia

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Hemophilia presents challenges to daily life, but improvements in treatment have made it increasingly possible for people with the bleeding disorder to live a normal life.

Hemophilia treatment centers

Among the most important resources available to patients and their families are specialized hemophilia treatment centers or HTCs. A network of approximately 141 HTCs operate in the U.S., often located at major university medical and research centers.

HTCs are specialized health care centers that offer information on research, treatment options, symptom management, and support strategies, as well as on how to perform certain treatments at home for patients with hemophilia and other bleeding disorders.

People treated at HTCs generally experience fewer bleeding complications and hospitalizations, and are more likely to report a better quality of life, possibly due to the centers’ comprehensive approach to care.

Family planning, pregnancy, and childbirth

Genetic counseling may help in understanding the risks of having a child affected by hemophilia prior to pregnancy, given that many prenatal tests are invasive.

Such tests, including amniocentesis and chorionic villus sampling, can provide expectant parents with a family history of the disorder a way to screen for the disease in their unborn child.

Most women who are hemophilia carriers — those who have a disease-causing mutation on one of their X chromosomes — have normal pregnancies without experiencing any bleeding complications. Some, though, may have mild bleeding due to low clotting factor levels.

To plan for a safe pregnancy and delivery, it is important that women are aware of their carrier status. Moreover, to minimize the risk of bleeds and other complications, factor levels should be closely monitored during pregnancy. If levels are low, precautions can be taken in advance to reduce the risk of excessive bleeding during labor.

Women who are hemophilia carriers may deliver vaginally, but trauma and prolonged labor should be avoided, as these carry higher risks of complications. Invasive delivery techniques, including the use of forceps or vacuum extractors, should be avoided when possible.

Falling clotting factor levels after delivery can trigger postpartum hemorrhage (PPH), a potentially serious complication featuring excessive bleeding. Female carriers remain at risk of PPH for up to six weeks after childbirth and should see their doctor immediately for any excessive bleeding during this period. Preventive treatment also may be recommended, especially for carriers with low clotting factor levels.

Typically, infants showing signs of bleeding at birth, those whose mothers are hemophilia carriers, or babies with a family history of the disorder, should be immediately tested after birth. This usually entails collecting a blood sample from the umbilical cord after delivery to measure clotting factor levels. Another blood sample taken when infants reach six months of age is usually used to confirm the diagnosis.

Physical activity and exercise

Regular physical activity is generally considered beneficial to hemophilia patients, since it may help improve joint, bone, and muscle health.

Because exercise and sports can increase the risk of bleeding through injuries, however, people with hemophilia are encouraged to consult a physical therapist and other health care specialists, regarding how best to design an exercise plan.

In general, non-contact sports, such as swimming, are often recommended over high-contact and collision sports, such as rugby or soccer/football. Specialists also can recommend the use of appropriate protective gear and additional preventive measures, as well as identify joints most susceptible to bleeds. They also will have advice on how best to recover from a bleed to minimize the chance of it recurring.

Diet and nutrition

Nutrition is a cornerstone of health and a key aspect of managing hemophilia. Nutritional recommendations for hemophilia broadly aim at ensuring that patients maintain a healthy weight and proper blood clotting.

As a general recommendation, people with hemophilia are encouraged to adopt diets rich in whole grains, fruits and vegetables, and low in fats, added sugars, and salt (sodium). Nutrient-rich foods containing high amounts of fiber, minerals, and vitamins also are recommended.

Additionally, diets that help maintain iron levels are often advised, as iron is a vital mineral that is lost during bleeds. Iron-rich foods include lean red meat, poultry, leafy green vegetables, broccoli, dried beans, grains, and raisins. Combining such foods with good sources of vitamin C, such as oranges and other citrus fruits, may help the body absorb iron better.

Iron, vitamin C, vitamin B12, vitamin B6, and folic acid play key roles in red blood cell production, which helps maintain normal blood volume. Vitamin E also is important for this process, but it can increase the risk of bleeding in high doses. For this reason, hemophilia patients should carefully discuss with their physicians when considering taking supplements containing vitamin E and other substances that could raise their risk of bleeding.

Each person presents a unique case, however, and should discuss any nutritional needs with a physician and/or dietician.

Insurance considerations

Clotting factors, the mainstay treatment for hemophilia, can be expensive and, in the U.S., not all health insurance companies cover this treatment equally. It is important to know which treatments your plan covers, what your coverage limits are, and any potential restrictions or waiting periods. When considering changing jobs, it also is important to look into the health insurance packages offered by a new employer.

Other considerations

Hemophilia complications may be further avoided if patients adopt certain preventive self-care measures, including having routine medical check-ups, strictly following their prescribed treatment plan, informing their health care providers of any alteration in their health status, and keeping a record of previous treatments and interventions.

Parents of children with hemophilia are advised to seek medical assistance in order to stay informed about the latest treatments and what to do during an emergency. It’s important to also attempt to reduce children’s exposure to potential hazards at home and during playtime. For example, children should wear protective sports equipment, such as bicycle helmets, while participating in physical activities.

 

Last updated: Aug. 31, 2021

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Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.