Hemophilia of Georgia is hosting the Augusta Trot to Clot Walk & Run on Saturday, May 14 at Lake Olmstead Stadium in Augusta, Georgia.
This 5k walk and run event helps raise funds for the organization’s Camp Wannaklot; Georgia’s only camp dedicated to children who have hemophilia or other inherited bleeding disorders.
The registration includes:
- Trot to Clot T-shirt
- Goodie bag
- Augusta GreenJackets’ Tickets
What you should know about hemophilia
According to the Centers for Disease Control and Prevention, hemophilia occurs in approximately 1 in 5,000 male births, and approximately 400 babies are born with the bleeding disorder each year.
Children with hemophilia can’t stop bleeding because they don’t have enough clotting factor in their blood. Clotting factors are needed for blood to clot. The severity of a child’s hemophilia depends on the level of blood clotting factors in his or her blood.
The 3 main forms of hemophilia include:
Hemophilia A- About 9 out of 10 people with hemophilia have type hemophilia A. This is also referred to as classic hemophilia or factor VIII deficiency.
Hemophilia B- This is also called Christmas disease or factor IX deficiency.
Hemophilia C- Some doctors use this term to refer to a lack of clotting factor XI. Hemophilia C usually doesn’t cause problems, but people may have increased bleeding after surgery.
Hemophilia A and B are inherited diseases. In about one-third of the children with hemophilia, there is no family history of the disorder. In these cases, it’s believed that the disorder could be related to a new genetic flaw.
The most common symptom of this disorder is heavy, uncontrollable bleeding. Bleeding can occur in these children, even with the minimal activities of daily life. It may also occur from no known injury. Bleeding most often occurs in the joints and in the head. Joint bleeds can lead to chronic and painful arthritis, deformity and can be crippling with repeated occurrences. Bleeding into the muscles can cause swelling, pain and redness. Swelling from excessive blood in these areas can increase pressure on tissues and nerves. This can cause permanent damage and deformity. Bleeding from injury or spontaneous bleeding in the brain are the most common causes of death in children with hemophilia and the most serious bleeding complication. Bleeding in or around the brain can occur from even a small bump on the head or a fall. Small bleeds in the brain can result in blindness, intellectual disability, and a variety of neurological deficits. It can lead to death if not spotted and treated right away.
The American Academy of Pediatrics states that, “before the 1980s, patients with hemophilia were at risk for acquiring blood-borne disease, especially human immunodeficiency virus and hepatitis B and C… Decades ago, the leading cause of death in patients with hemophilia was AIDS or chronic liver disease, whereas now a patient with hemophilia is expected to have a lifespan approaching that of individuals without hemophilia. Hemophilia treatment centers have been established to improve access to care for patients with hemophilia… Prevention of complications is a major goal of hemophilia treatment centers, and in fact, patients who receive care at a comprehensive care clinic are 40% less likely to be hospitalized for bleeding complications.”
“A CDC-sponsored randomized clinical trial found that children who were treated on a regular basis to prevent bleeding had less evidence of joint damage by 6 years of age than did those who were treated only after a bleed had started.”
Hemophilia of Georgia lists Children’s Hospital of Georgia as one of four federally funded pediatric hemophilia treatment programs in the state of Georgia. The Pediatric Cancer and Blood Disorder Center at CHOG operates the only pediatric hemophilia treatment program in the Augusta region.
For more information about the pediatric hemophilia treatment program at CHOG visit augustahealth.org/chog or call 706-721-KIDS (5437).
For more information about the Augusta Trot to Clot Walk & Run, visit http://www.hog.org/fundraising/page/trot-to-clot-walk-and-run
Sources: Augusta University Health, American Academy of Pediatrics, U.S. Center for Disease Control and Prevention, and Hemophilia of Georgia
