The Unite for Bleeding Disorders Walk, formerly the National Hemophilia Walk, is a nationwide fundraising and awareness campaign of the National Bleeding Disorders Foundation in partnership with our chapter network. Participants raise money for crucial research, advocacy, education, and support services by joining together in a fun and festive event. 

The National Bleeding Disorders Foundation is dedicated to finding better treatments and cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy, enabling people and families to thrive. Established in 1948, the National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations, and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

Learn more about the National Bleeding Disorders Foundation at www.bleeding.org.

Bleeding disorders are a group of disorders that share the inability to form a proper blood clot. Improper clotting can be caused by defects in blood components such as platelets and/or clotting proteins, also called clotting factors. The body produces 13 clotting factors. If any of them are defective or deficient, blood clotting is affected.

Some bleeding disorders, such as hemophilia, can be inherited or acquired. Others can occur from such conditions as anemia, cirrhosis of the liver, HIV, leukemia, and vitamin K deficiency. They also can result from certain medications that thin the blood, including aspirin, heparin, and warfarin.

Symptoms of a bleeding disorder include:

• Bleeding into joints, muscles and soft tissues

• Excessive bruising

• Prolonged, heavy menstrual periods (menorrhagia)

• Unexplained nosebleeds

• Extended bleeding after minor cuts, blood draws or vaccinations, minor surgery or dental procedures

Types of Bleeding Disorders

• Hemophilia

  • Hemophilia A (factor VIII (8) deficiency) and hemophilia B (factor IX (9) deficiency) are genetic disorders caused by a missing or defective clotting protein, factor VIII or factor IX. Although it is passed down from parents to children, about 1/3 of cases found have no previous family history and are caused by a spontaneous mutation, a change in a gene.

  • According to the US Centers for Disease Control and Prevention (CDC), hemophilia occurs in approximately 1 in 5,000 live male births.There are between 30,000 – 33,000 males with hemophilia in the US. Hemophilia A is four times as common as hemophilia B. Hemophilia affects all races and ethnic groups. Women and girls can also be affected. 

• Von Willlebrand Disease (VWD)

  • People with VWD are either missing or low in the clotting protein von Willebrand factor (VWF) – or it doesn’t work as it’s supposed to. For a person to make a successful clot, VWF binds to factor VIII (8), another clotting protein, and platelets in blood vessel walls. This process will help form a platelet plug during the clotting process. People with VWD are not able to form this platelet plug, or it will take longer to form.

  • VWD is the most common bleeding disorder, affecting up to 1% of the US population – or approximately 1 in every 100 people. It occurs equally in men and women. However, women may be more symptomatic due to heavy menstrual bleeding (periods). VWD occurs equally across all races and ethnicities.

• Other Factor Deficiencies

  • Blood clotting is a complex process, involving many different proteins, called factors, each of which plays a different role in the blood clotting process. Factor deficiencies are defined by which specific clotting protein in the blood protein is low, missing or doesn't work properly. The majority of these conditions were only identified within the last 60-70 years.

• Inherited Platelet Disorders

  • Platelets play an important role in blood clotting, so when a person has a low number of platelets, too many platelets, or their platelets don’t work the way they should, they have a platelet disorder. People with platelet disorders take longer to stop bleeding.

  • Platelets are tiny, irregularly shaped blood cell pieces (called fragments) that play an important role in the making of blood clots. When an injury occurs and a blood clot is needed, the platelets become sticky and help plug the site of the injury. They attract other proteins needed in the clotting process and they help form a stable clot. There are several ways that platelets may not work properly, which result in platelet disorders. Some platelet disorders are not fully understood and may result in a diagnosis of an "unspecified platelet disorder."

Treatment

Treatment for bleeding disorders varies, depending on the condition and its severity. For some bleeding disorders, there are clotting factor concentrates that can be infused prophylactically or on-demand at home, to prevent or treat bleeds. Some women with bleeding disorders may use hormone therapy (birth control pills) to manage heavy periods. For other bleeding disorders, there are topical products, nasal sprays, and fresh frozen plasma, which is administered in a hospital setting. While treatment exists, it is costly and may require lifelong infusion of replacement clotting factor that is manufactured either from human plasma or using recombinant technology. Currently, there is no cure for hemophilia or other bleeding disorders. 

Nearly 90% of Americans with severe hemophilia became infected with HIV in the 1980s when the nation’s blood supply was contaminated by blood pooled from people infected by HIV/AIDS. More than 50% of people with hemophilia infected with HIV have died. Since 1986, there have been no reported cases of HIV transmission through factor concentrates in the U.S. Current donor screening measures and improved viral inactivation methods have been integrated into the manufacturing process to dramatically improve the safety of these plasma-derived products.