Although this form of the disease usually manifests with less frequent bleeding, it can lead to long-term joint damage, chronic pain, and significantly affect a person’s quality of life, according to a press release.
Read more „Luminor“ lowers this year’s GDP growth forecast
Research shows that more than 75% of patients with moderate hemophilia experience at least one bleeding episode per year. More than a third of adults and about 40% of children who have not received prophylactic treatment experience three or more bleedings per year.
Getting used to symptoms that should not be considered normal
Although moderate hemophilia is often considered a milder form of the disease, doctors emphasize that this view can be misleading.
“It is important to understand that moderate disease is not insignificant. Even less frequent bleedings can cause long-term health consequences if the disease is not properly controlled,” says hematologist Dr. Kazimieras Maneikis.
According to the specialist, some adult patients still live according to the understanding of hemophilia and its treatment formed decades ago. Previously, treatment options were much more limited, so bleeding, joint pain, or movement restrictions gradually became part of everyday life.
“Patients may get used to aching joints, morning stiffness, or recurring bleedings and think that this is just how it has to be with hemophilia. However, today’s treatment options allow many people to live more actively and feel significantly fewer disease consequences,” the doctor explains.
According to K. Maneikis, not experiencing life-threatening bleedings can create the impression that the disease is controlled. However, hemophilia does not always progress obviously.
Why does the disease remain unrecognized?
Pediatric hematologist Sonata Šaulytė-Trakymienė points out that one of the biggest problems of moderate hemophilia is that some patients do not know they have the disease for a long time.
“Severe hemophilia usually becomes apparent and is diagnosed very early, in the first years of life. However, people with moderate or mild forms often live with bleeding signs that neither they nor sometimes doctors pay enough attention to,” says the hematologist.
According to her, people with moderate hemophilia usually experience bleedings not spontaneously but in certain situations – after injuries, during sports, after surgeries, or dental procedures. Because of this, bleeding episodes are often associated with a specific situation rather than a possible clotting disorder.
When diagnosing the disease, it is important not only to evaluate test results but also to thoroughly discuss the person’s bleeding history – bleedings after procedures, injuries, frequent bruises, or similar cases in the family.
Read more President Valdas Adamkus’ 100th Anniversary – a Special Run Across America
The disease was hidden behind sports injuries
The fact that moderate hemophilia can remain unnoticed for many years is also shown by a recently diagnosed case in Lithuania.
“Recently, colleagues in Kaunas diagnosed moderate hemophilia in a professional athlete. Although the man was actively involved in sports and lived a normal life, looking back it turned out that there had been various bleeding episodes throughout his life. However, they were considered consequences of sports injuries, not signs of a possible clotting disorder,” the doctor says.
According to the specialist, such stories remind us that even less frequent bleedings should not be considered accidental, especially if they recur under similar circumstances.
Invisible damage to joints
One of the biggest problems of moderate hemophilia is microbleeds, i.e., small and unrecognized bleedings into the joints. They do not necessarily cause obvious symptoms, so a person may not even realize that damaging processes are occurring in the joints.
“Even a small but repeated entry of blood into a joint causes inflammation. Over time, the joint cartilage is damaged, joint damage develops, chronic pain and movement restrictions appear. Sometimes patients are surprised to learn that the joint is already damaged, although they did not feel clear bleeding episodes,” explains K. Maneikis.
For this reason, modern hemophilia treatment is focused not only on stopping bleedings but also on their prevention and long-term joint protection. This principle, previously primarily applied to severe hemophilia, today becomes relevant for some patients with moderate hemophilia as well.
Doctors note that hemophilia prophylaxis options have significantly changed in recent years. Today, many patients can already access subcutaneous bleeding prevention treatments, which can be administered less frequently – up to once a month – thus significantly reducing the treatment burden. According to specialists, this helps ensure consistent protection against bleedings.
The diagnosis was revealed by complications after surgery
The fact that the disease can remain unnoticed not only in adults is shown by the story of a young patient. Dr. S. Šaulytė-Trakymienė recalls a seven-year-old boy who was diagnosed with hemophilia only after a tonsil surgery. After the procedure, severe bleeding started, and more detailed tests revealed that the child had moderate hemophilia.
“When we started talking with the family, it turned out that there had been symptoms before – wounds that bled longer, recurring bleedings after injuries. However, these signs were not linked to a possible clotting disorder because routine clotting tests were normal,” the doctor says.
Specialists emphasize that moderate hemophilia often seems less threatening than the severe form of the disease, but its consequences can be no less significant. Therefore, even less frequent bleedings should not be considered normal, and timely recognized and properly controlled disease can help avoid irreversible joint damage and preserve a good quality of life.
Read more Opened «Teltonika» essential Kuprioniškiai transformer substation
