CDC Findings Suggest Hemophilia Carriers Vulnerable to Joint Damage

In a newly highlighted study, the US Centers for Disease Control and Prevention (CDC) concluded that hemophilia carriers showed evidence of joint abnormalities as early as the pre-teen years regardless of the severity of bleeding symptoms. Results of the study were first published in “Females with FVIII and FIX Deficiency have Reduced Joint Range of Motion,” in August 2014 in the American Journal of Hematology. The lead author was Robert Sidonio, MD, MS, Department of Pediatrics, Division of Hematology/Oncology, Vanderbilt University Medical Center in Nashville, TN.

To learn whether hemophilia carriers reported joint bleeding and showed physical signs of joint damage or destruction, CDC looked at joint abnormalities among 451 women presumed to be hemophilia carriers aged 2-69 years. The women were enrolled in a national public health tracking project called the Universal Data Collection (UDC) system. The UDC was created in 1998 by the CDC, in cooperation with the federally funded hemophilia treatment center (HTC) network, to collect vital health information on individuals with bleeding disorders in the US.

Data for the study were gathered by either an HTC physical therapist or other trained healthcare provider, who collected information on specific participant characteristics, such as race/ethnicity, income and educational level (demographic information), as well as information on bleeding and infectious disease history, and range of movement measurements in five joints (right and left shoulders, elbows, hips, knees and ankles).

CDC’s most prominent findings were:

• The proportion of female hemophilia carriers reporting at least one joint bleed in the last six months increased as the severity of hemophilia worsened
• Approximately one in seven females with mild hemophilia reported at least one joint bleed in the last six months. Mild hemophilia means they have 6% to 40% of normal clotting ability.
• Approximately one in three females with moderate hemophilia reported at least one joint bleed in the last six months. Moderate hemophilia means they have 1% to 5% of normal clotting ability.
• Approximately half of females with severe hemophilia reported at least one joint bleed in the last six months. Severe hemophilia means they have less than 1% of normal clotting ability.

Hemophilia carriers showed signs of joint abnormalities as reflected by reduced joint range of movement, which worsened with increasing levels of severity of hemophilia.

These findings suggest that joint bleeding might be occurring even before a carrier’s adolescent years. Sidonio and his co-investigators also acknowledge that this research is preliminary and that the next step is to document joint disease with X-rays and other tools.

 Source: CDC release dated March 26, 2015