Hemophilia is classified as mild, moderate, or severe, depending on the level of clotting factor in the blood. About 70% of those with hemophilia have the severe form.
The most important life-threatening complications of the disease are bleeding in the skull and hemorrhages in soft tissue around airways or other internal organs.
About 10% of those with severe hemophilia have bleeding in the skull, and 30% with the condition die. There is an up to 8% risk that a person with the disease will develop what doctors call intracranial bleeding during their lifetime. And a third of all hemophilia deaths is due to bleeding in the skull.
People with hemophilia can also develop chronic, debilitating joint disease.
About 25% of young people with severe hemophilia — those between the ages of 6 and 18 — have below-normal motor skills, academic performance, and emotional and behavioral problems. With appropriate education and treatment, people with hemophilia can have fulfilling and productive lives.
What is the life expectancy of someone with hemophilia?
For most of human history, hemophilia was regarded as a fatal disease. In the 1960s, most people born with severe hemophilia did not live to adulthood.
Modern treatments have dramatically changed these outcomes, however. Nowadays, people with hemophilia who are diagnosed and started on treatment as children generally have a life expectancy that is comparable to that of the general population, according to estimates from the World Federation of Hemophilia (WFH).
A patient’s prognosis may vary somewhat depending on the severity of disease, but today even children with severe hemophilia are generally expected to have a normal life expectancy, if they are started on treatment early.
Based on the same WFH estimates, the life expectancy for men already living with hemophilia is about 10 years shorter than that for men without hemophilia. These estimates, however, are at least partly driven by other complications, particularly high rates of blood-borne infections transmitted to hemophilia patients via certain medications in the 1980s.
With modern screening techniques, the risk of getting an infection from hemophilia treatments nowadays is slim to none, which has helped to improve outcomes for patients diagnosed and treated in the 21st century.
Life expectancy between hemophilia A and hemophilia B is similar. Because hemophilia C is generally much milder than hemophilia A or B, typically people with hemophilia C don’t have a decreased life expectancy.
In rare acquired forms of hemophilia, the risk of mortality has been suggested to be highest in individuals who are elderly or have other health problems like cancer.
Outlook with hemophilia
Preventive measures and early treatment have significantly improved the long-term outlook, or prognosis, for people with severe hemophilia. Two major developments have contributed to a longer life expectancy in patients. One is clotting-promotion medicines known as antihemophilic factor concentrates, which prevent serious bleeding. The other is comprehensive care. These two factors combined can keep the disease from worsening in many patients, leading to increased life expectancy and better quality of life.
Although joint deterioration remains a chronic complication in hemophilia, prompt and proper  treatment can greatly reduce the risk of life-threatening bleeding episodes and the severity of long-term damage to joints.
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