Prognosis and Life Expectancy for People Living With Hemophilia

The severity of a person’s hemophilia depends on the amount of clotting factor they have in their blood. Generally speaking, the disease is considered mild, moderate or severe, although around 70 percent of people living with the disease have the severe form.

MORE: Five tips for healthy living with hemophilia

Treatment for people with hemophilia has improved dramatically over the past few decades. With access to clotting factor, many people can now prevent major bleeds and live a normal life.

However, around 30 percent of those with the disease will die from a bleeding-related incident. The most life-threatening is intracranial bleeding. It’s estimated that around 10 percent of hemophilia patients will suffer some form of bleeding in the skull and this accounts for around a third of all hemophilia deaths.

Some with the disease will suffer from joint diseases like arthritis later in life, particularly if they didn’t treat joint bleeds quickly when they were young.

Without appropriate treatment, many hemophiliacs will die before adulthood. With treatment, the average life expectancy of someone with the disease is just 10 years less than the average man’s.

In the 1960s, the average lifespan for a boy with hemophilia was just 11 years old. Treatment and comprehensive care have both increased the average life expectancy dramatically, however many men with the disease died in the 1980s due to HIV- and AIDS-contaminated blood products. Find out more about prognosis and life expectancy of people with hemophilia here.

MORE: A brief history of hemophilia treatment

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 another 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.

Wendy is a proven blogger and social media manager who has helped to build online communities for businesses and organizations. She currently heads the website’s social outreach online through social media platforms such as Facebook, Twitter, and Pinterest.

One comment

  1. Paul Clement says:

    One must be careful in interpreting statistics and in wording of sentences. Stating the 30% of people with hemophilia will die of a “bleeding related incident” is inaccurate. In fact, studies have found that between 8% and 10% have died of hemorrhage (and this number included many who were not on prophylaxis, meaning it is likely substantially lower now that most individuals in the U.S are on prophylaxis).
    As for intracranial hemorrhage(ICH), 5% to 10% of people with hemophilia will suffer from ICH. Of this number, older studies report up to 20% may die. 20% of 10% is NOT a “third of all hemophilia deaths”. Newer studies report that less than 2% of those with ICH die in developed countries. This number can also be substantially reduced: more than 40% of ICH cases occur within the first week of life, caused by traumatic birth. For the two thirds of families that have a family history of hemophilia, this is almost entirely preventable. Also, approximately half of those who died from ICH had inhibitors–for those in which ITI is not successful, perhaps prophylaxis with the new drug Hemlibra will be beneficial, further lowering these death statistics.
    As for the statement that 70% of people living with hemophilia have severe hemophilia–this is not borne out by CDC data, which includes the largest cohort of patients in the U.S.–patients seen at HTCs are more or less equally divided between all severities.
    Finally, although the lifespan of people with hemophilia in general is about 10 years less than the average, those who have been on prophylaxis their whole life have a lifespan approaching that of people without hemophilia.

    Mortality among males with hemophilia: relations with source of medical care. J. Michael Soucie, Rachelle Nuss, Bruce Evatt, Abdou Abdelhak, Linda Cowan, Holly Hill, Marcia Kolakoski, Nancy Wilber, the Hemophilia Surveillance System Project Investigators. Blood Jul 2000, 96 (2) 437-442.

    Decreased Mortality From Intracranial Hemorrhage In Pediatric Patients With Hemophilia. Char Witmer; Blood 2013 122:208.

    CDC Report on UDC:
    https://www.cdc.gov/ncbddd/blooddisorders/udc/documents/report-udcprogram_january2005-december-2009_jan-2014.pdf

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