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Bleeding Disorder Awareness Month

This special month aims to bring together people with all inherited (conditions that run in families) bleeding disorders to raise awareness of these rare conditions and their potential health problems. The bleeding disorders community includes more than three million Americans who have hemophilia, von Willebrand disease, and other rare bleeding disorders (called rare factor deficiencies).

  • According to the US Centers for Disease Control and Prevention, hemophilia occurs in approximately 1 in 5,000 live births.
  • There are an estimated 20,000 people with hemophilia in the US; 1350 in Ohio as last reported by the Ohio Bleeding Disorder Council in March 2017.
  • VWD is the most common bleeding disorder, affecting up to 1% of the US population; that is over 3 million people just with VWD; approximately 116,000 in Ohio.

 

Ohio has 8 Hemophilia Treatment Centers (HTC) located across the state; 3 adult and 5 that treat children.

 

  • About 70% of the people with Hemophilia receive care at an HTC and the numbers are steadily increasing for those with VWD and other bleeding disorders.
  • Mortality rates and hospitalization rates for bleeding complications from hemophilia were 40% lower among people who received care in hemophilia treatment centers than among those who did not receive this care.

 

“Bleeding disorder” is a general term, which includes a wide range of medical problems that result in poor blood clotting and abnormal bleeding. Here’s what you need to know about hemophilia and other rare bleeding disorders:

Hemophilia

Hemophilia is a very rare, inherited blood disorder and affects only about 20,000 Americans. Despite its rarity, it is one of the most common bleeding disorders, and affects primarily males because it is linked to the X chromosome. There are four types of hemophilia, each classified depending on what protein is not present in the blood; however, regardless of type, people suffering from the disorder do not bleed more than those without it, just longer. Those with the disorder are usually diagnosed at birth, after telling the doctor of disease presence in the family.

Hereditary Hemorrhagic Telangiectasia (HHT)

 

HHT is a genetic disorder in which the blood vessels don’t develop properly. It affects all genders and racial and ethnic groups. The most common sign is frequent nosebleeds. Other signs include abnormal blood vessels appearing through your skin and internal bleeding.

 

Thalassemia

 

Thalassemia is a disorder when your body does not produce enough hemoglobin (a protein vital to your red blood cells). Like the other blood disorders, thalassemia is inherited and usually discovered early in life due to severe anemia. The severity of the disorder varies from person to person and is most common among people from Mediterranean countries.

 

Von Willebrand Disease (VWD)

 

VWD is an inherited blood disorder in which the blood does not clot properly. It gets its name from one of the proteins found in our blood called von Willebrand factor, which is a protein that helps the body stop bleeding. Those with VWD have either too much or too little of this protein causing improper function. Signs and symptoms include: frequent or hard-to-stop nosebleeds; easy bruising; heavy menstrual bleeding; and longer than normal bleeding after injury, surgery, childbirth, or dental work. 

 

To learn more about blood disorders visit:

https://www.cdc.gov/features/red-tie-challenge/index.html

 

Page Updated: 3/5/2018