Facts about hemophilia diagnosis
Most hemophilia patients are diagnosed when they are very young. According to a report by The Centers for Disease Control and Prevention (CDC), the average age at diagnosis is 36 months for children with mild hemophilia, eight months for those with moderate hemophilia, and one month for those with severe forms of hemophilia.
About two-thirds of children found to have hemophilia are born to families with a history of the disease. In cases where a family history is known, prenatal genetic testing is sometimes requested to establish a diagnosis before birth.
For the remaining one-third, these babies are born with a mutation not found in other family members, and their diagnosis usually follow a bleeding event typical of hemophilia.
Facts about hemophilia treatment
A 2007 study found that children who received regular prophylactic (preventive) treatment had less evidence of joint damage by age 6 than children treated only after a bleed had started.
Serious complications from bleeding episodes in people hemophilia (A, B or C) — serious defined as at risk of death — were 40 percent lower overall among people who received specialized care in dedicated treatment centers. About 70 percent of American hemophilia patients are estimated to receive treatment in one of these centers nationwide.
Facts about complications in hemophilia
A study found that prophylaxis decreased by half the risk of bleeding inside the skull — intracranial hemorrhage, the most serious type of bleeding in hemophilia patients. Another study showed that hemophilia patients who learn how to treat their bleeds at home are less likely to be admitted to hospital due to a bleeding complication.
CDC data has found that being overweight is strongly associated with limited joint mobility, as well as more severe disease. Moreover, a study that included over 10,000 patients reported that overweight, or obese, boys and men were less likely to infuse a clotting factor at home or perform self-infusion, than patients of a normal weight. Women who are carriers for hemophilia A and B were also found to have a reduced range of joint motion compared to non-carriers in a study.
As hemophilia patients live longer (and their life expectancy is now approaching the U.S. average), cardiovascular disease and associated conditions — such as ischemic heart disease (hardening of the arteries) and atrial fibrillation (irregular heartbeat) — are a growing issue. High levels of factor concentrates due to disease treatment can trigger clot formation and is a particular concern, reports state, but on the whole, the hemophilia community’s risk of heart disease is largely that of the general population’s — meaning a healthy diet and proper exercise are equally important to these patients.
Chronic kidney disease has also been linked to HIV and kidney bleeding in hemophilia patients. Kidney disease is also prevalent in people with high blood pressure, and a 2013 study found hypertension more common in people with hemophilia than in comparative groups without hemophilia.
Key prevention strategies in hemophilia
There are five key prevention goals included in the National Hemophilia Foundation’s National Prevention Program:
- Get an annual check-up at a specialized treatment center
- Get vaccinated against hepatitis A and B
- Treat bleeds early and adequately – and if you can, use regular preventive treatment
- Exercise and maintain a healthy weight to protect your joints
- Get tested on a regular basis for blood-borne infections.
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