Bleeding is the best-known symptom of hemophilia, but it is not the only symptom. Pain, mobility issues, fatigue, and depression affect many people with bleeding disorders.
Some symptoms of hemophilia are caused directly by bleeding, while others may result as complications of bleeds.
Bleeding varies with the level of clotting factor each person has – more severe symptoms are likely when levels of clotting factor are very low. People with hemophilia can have internal or external bleeds. People with mild bleeding disorders may only experience bleeding problems after surgery or dental work. People with more severe cases of hemophilia may experience spontaneous bleeds. Intracranial bleeds (bleeds in the brain) are among the most dangerous and life-threatening.
Women were long considered to be asymptomatic carriers of hemophilia. However, doctors have begun to realize that women with hemophilia genes can have low levels of clotting factor that lead to heavier-than-normal menstrual periods and bleeding during or after surgery or childbirth. Some women with a bleeding disorder develop anemia, or low red blood cells, which contributes to fatigue.
Low levels of clotting factor may cause:
According to the results of a survey of MyHemophiliaTeam members, 57 percent of people with bleeding disorders experienced pain severe enough to make it difficult to leave the house; 71 percent reported pain that impacted their sleep and ability to perform household chores. During a bleed, the affected limb or body part may be painful, warm, tight, and swollen. Over time, bleeds may gradually cause damage to joints that contribute to chronic pain. Some people with bleeding disorders report frequent headaches.
Bleeding can gradually damage joints to the point where movement is difficult and the joint becomes deformed. Approximately 56 percent of those surveyed by MyHemophiliaTeam said that difficulty walking and other mobility issues impeded their day-to-day routine. Joint damage can become severe enough that some people with bleeding disorders need surgery to repair or replace a joint.
The results of the MyHemophiliaTeam survey revealed that 65 percent of those with hemophilia report depression severe enough to affect their daily life. Many people with bleeding disorders also report experiencing fatigue and anxiety. Depression, anxiety, and fatigue are common symptoms in people with chronic illnesses.
Babies with severe hemophilia A may be diagnosed at birth or shortly after. For those with mild or moderate bleeding disorders, the condition may not be diagnosed until later in childhood or even adulthood. Girls and women with bleeding disorders may be diagnosed when they experience excessive bleeding during menstruation, pregnancy, or childbirth. Bleeding disorders may be diagnosed in children or adults when a small cut continues to bleed for longer than usual, they have multiple nosebleeds with no known cause, they bruise very easily, bleed excessively during dental procedures, or when joints become swollen or painful.
Some people with bleeding disorders develop inhibitors. Inhibitors are antibodies – proteins made by the immune system – that attack and destroy replacement clotting factor, making the treatment far less effective. Between 15 and 30 percent of people with severe hemophilia A develop inhibitors. It is less common for people with hemophilia B to develop inhibitors – between 2 and 5 percent – but inhibitors are much harder to treat in those with hemophilia B. Inhibitors are most likely to develop in childhood, especially during the first 50 days of hemophilia treatment. Risk for developing inhibitors is higher in those whose hemophilia is severe, those with a family history of inhibitors, and people of African descent. Read more about how hemophilia and inhibitors are treated.
Many older adults with hemophilia live with HIV or hepatitis, having contracted it during the 1970s or 1980s, before testing and heat-treating procedures came into practice.