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The term “spontaneous bleed” is used extensively within the hemophilia community. Recently, the Canadian Physiotherapist in Hemophilia Care (CPHC) Group has been discussing the meaning of this term and its implications.
“Spontaneous bleeding” is referred to in the medical literature. It is used by medical professionals and is found in various printed materials. There are numerous scientific articles quoting the term, especially when referring to central nervous system (CNS) bleeds. Medical professionals including physicians, nurses, social workers and physiotherapist also refer to the term “spontaneous bleed” when a bleed occurs for which the cause is unknown. In the resource binder “All About Hemophilia: A Guide for Families”, it is stated that “There is often no obvious cause for the bleeding- it just happens. This is called spontaneous bleeding.” In addition, some believe that spontaneous bleeding can occur in persons with severe hemophilia or in those with inhibitors.
The term spontaneous is defined as a process or event occurring without apparent external cause. This leads us to believe that a person with hemophilia can sustain a bleed for no good reason. Is this true? Is the problem in hemophilia not only a lack of factor which affects the coagulation cascade but also a problem of bleeding with no apparent cause, without stimulus or trauma? Is there a problem with the integrity of the tissue? Is there any evidence to show that normal tissues can start bleeding without any disturbance in hemophilia?
In the absence of evidence based data on the topic, we do have long term clinical follow up. Take for example a knee joint bleed. After an initial trauma followed by a bleed, the tissues are disrupted. Recurrent bleeding in the same joint may occur after minimal trauma that may go unnoticed, leading one to believe that the resulting bleed happened “spontaneously”. Perhaps it is semantics. Rather than using the term “spontaneous bleed”, would it add clarity to say “a bleed with an unrecognized cause”? Getting away from the term spontaneous may help the person with hemophilia and those who treat them to recognize that even minimal trauma can trigger a bleed and thus lead to prevention, better recognition and more timely response to treatment so that the health of the person with hemophilia can be improved.
Perhaps more questions are raised than answers exist at this point. However, the CPHC looks forward to your opinions and ongoing discussion on the topic.
Nicole Graham, PT
Vice President, Canadian Physiotherapist in Hemophilia Care
Originally published in Hemophilia Today; reprinted with permission of Nicole Graham