March is Bleeding Disorders Awareness Month
Bleeding Disorders Awareness Month is observed every year in March to talk about and spread awareness about bleeding disorders such as hemophilia. This genetic disease is found in every 1 in 5,000 boys but is very rarely reported in girls. To spread awareness about bleeding disorders and work towards their prevention, organizations use the month of March to run programs, campaigns, and other projects. It’s an opportunity for people living with these diseases to share their stories and learn more about what is needed to treat and cure these conditions.
History of Bleeding Disorders Awareness Month
Bleeding Disorders Awareness Month has been observed each March since 2016, after being designated as a national health observance by the U.S. Department of Health and Human Services. BDAM aims to increase awareness of inheritable blood and bleeding disorders among the public and bring them to the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.
Before BDAM, March was known as “Hemophilia Awareness Month” – a designation confirmed by President Ronald Reagan in March 1986.
‘Bleeding disorders’ is a general term used to describe various conditions. The most common bleeding disorder is hemophilia, which is a condition that causes the blood clotting process to slow down, leading to regular occurrences of heavy bleeding. Approximately 20,000 patients in the U.S. are registered as having this disease, and globally, it impacts hundreds of thousands of people’s lives.
The National Hemophilia Foundation (N.H.F.) has been around since 1948, when Robert and Betty Jane Henry founded it. Their son had been diagnosed as a hemophiliac and the only way to treat him at the time was by means of a continuous blood transfusion. Within six years, the founders of the N.H.F. had expanded the organization so much that the once two-member team now consisted of numerous doctors and researchers, all committed to fighting hemophilia.
A medical advisory council was formed to provide those suffering from the disorder with treatment options in the years that followed. Today, the foundation has spread all across the country and has a presence in every state. Together, members of the N.H.F. have raised more than $22 million for the cause. The founders' efforts have been built upon, and their dedication to researching ways to fight this bleeding disorder has not wavered.
In attempts to gain wider attention at the national and international level, the N.H.F. eventually managed to get a whole month dedicated to spreading awareness about blood disorders and discussing the efforts that need to be taken to develop a cure or better treatment options for the disorder. In 2016, March was declared as Bleeding Disorder Awareness Month, and ever since, the foundation has been using this month to spread as much information as possible about various types of bleeding disorders.
Later, a red-tie challenge was added to the traditions of Bleeding Disorders Awareness Month. People were encouraged to wear red ties to raise awareness of the cause and bring people together to fight bleeding disorders.
What Are Bleeding Disorders?
Bleeding disorders are a group of conditions that result when the blood cannot clot properly. In normal clotting, platelets, a type of blood cell, stick together and form a plug at the site of an injured blood vessel. Proteins in the blood called clotting factors then interact to form a fibrin clot, essentially a gel plug, which holds the platelets in place and allows healing to occur at the site of the injury while preventing blood from escaping the blood vessel. While too much clotting can lead to conditions such as heart attacks and strokes, the inability to form clots can be very dangerous as well, as it can result in excessive bleeding. Bleeding can result from either too few or abnormal platelets, abnormal or low amounts of clotting proteins, or abnormal blood vessels.
Hemophilia is perhaps the most well-known inherited bleeding disorder, although it is relatively rare. It affects mostly males. Many more people are affected by von Willebrand disease, the most common inherited bleeding disorder in America caused by clotting proteins. Von Willebrand disease can affect both males and females. Platelet disorders are the most common cause of the bleeding disorder and are usually acquired rather than inherited.
Facts About Blood Disorders
- They’re first referenced in the 2nd century. Blood disorders were first mentioned in a passage in the Talmud, which is an ancient Jewish text.
- Thousands of hemophiliacs died of AIDS. In the 1980s, it is estimated that 90% of all patients with severe hemophilia in the U.S. contracted HIV due to donations of contaminated blood.
- Small injuries become a big deal. If you are a hemophiliac, even a small injury can mean a trip to the hospital because of blood loss.
- Hemophilia is diagnosed through blood tests. Doctors can run blood tests to check if blood is clotting properly and a different type of blood test reveals the type of hemophilia and the severity levels.
- Von Willebrand disease is the most common. People with this disorder have low levels of a protein that help the blood to clot.
Am I At Risk?
Bleeding disorders such as hemophilia and von Willebrand disease result when the blood lacks certain clotting factors. These diseases are almost always inherited, although in rare cases, they can develop later in life if the body forms antibodies that fight against the blood's natural clotting factors. Individuals and pregnant women with a family history of bleeding disorders should talk to their doctors about detection and treatment. Symptoms of bleeding disorders may include:
- Easy bruising
- Bleeding gums
- Heavy bleeding from small cuts or dental work
- Unexplained nosebleeds
- Heavy menstrual bleeding
- Bleeding into joints
- Excessive bleeding following surgery
What Is Hemophilia And How Is It Treated?
Hemophilia is a rare, inherited bleeding disorder that can range from mild to severe, depending on how much clotting factor is present in the blood. Hemophilia is classified as type A or type B, based on which type of clotting factor is lacking (factor VIII in type A and factor IX in type B). Hemophilia results from a genetic defect found on the X chromosome. Women have two X chromosomes. Women who have one X chromosome with the defective gene are termed carriers and they can pass the disease onto their sons. Due to random chromosome activation, some women carriers may range from asymptomatic to symptomatic depending on how much of their factor VIII or IX is inactivated. In fact, some women may have “mild hemophilia,” though this is less common. Men have one X and one Y chromosome, so if their X chromosome has the defective gene, they will have hemophilia.
Because blood does not clot properly without enough clotting factors, any cut or injury carries the risk of excessive bleeding. In addition, people with hemophilia may suffer from internal bleeding that can damage joints, organs, and tissues over time.
In the past, people with hemophilia were treated with transfusions of factor VIII obtained from donor blood, but by the early 1980s, these products were discovered to be transmitting blood-borne viruses, including hepatitis and HIV. Thanks to improved screening techniques and a major breakthrough that enabled scientists to create synthetic blood factors in the laboratory by cloning the genes responsible for specific clotting factors, today's factor-replacement therapies are pure and much safer than ever before.
What Is Von Willebrand Diseases And How Is It Treated?
Von Willebrand disease is an inherited condition that results when the blood lacks functioning von Willebrand factor, a protein that helps the blood to clot and also carries another clotting protein, factor VIII. It is usually milder than hemophilia and can affect both males and females. Women are significantly affected by von Willebrand disease during menses. Von Willebrand disease is classified into three different types (Types 1, 2, and 3), based on the levels of von Willebrand factor and factor VIII activity in the blood. Type 1 is the mildest and most common form; Type 3 is the most severe and least common form.
With early diagnosis, people with von Willebrand disease can lead everyday, active lives with early diagnosis. People with mild cases may not require treatment but should avoid taking drugs that could aggravate bleeding, such as aspirin and ibuprofen, without first consulting with a doctor. More severe cases may be treated with drugs that increase the level of von Willebrand factor in the blood or with infusions of blood factor concentrates. It is important for people with von Willebrand disease to consult with their doctors before having surgery, having dental work, or giving birth, so that proper precautions can be taken to prevent excessive bleeding. You may be referred to a hematologist, a doctor who specializes in the treatment of blood disorders.
Why Bleeding Disorders Awareness Month Is Important
It spreads awareness. The mission is to spread awareness as far as possible. With a proper early-stage diagnosis, the symptoms of many bleeding disorders can be suppressed.
Everyone deserves to live a healthy life. With research and advancements, a cure can be found someday for many of these conditions. In order to make this happen, the world needs to come together and take this matter seriously.
It creates understanding. These conditions are often misunderstood and misdiagnosed, which causes problems later. Understanding that bleeding disorders are severe conditions that need early diagnosis is extremely important.
Observing Bleeding Disorders Awareness Month
Participate in the red-tie challenge. Be part of the red-tie challenge and show your support for the cause throughout March. If people ask you why you keep wearing that red tie, use the opportunity to talk about bleeding disorders.
Donate blood. Thanks to advanced research, doctors have been able to reduce the harm caused by bleeding disorders, but there is always a need for blood donors. Donate a pint this March and save a life.
Share your support on social media. Over the years, social media has become an invincible force. Show your support for the month by sharing relevant content on social media and making the topic trend.
Sources:
https://www.hemophilia.org/give/join-us/bleeding-disorders-awareness-month
https://nationaltoday.com/bleeding-disorders-awareness-month/
https://www.cdc.gov/ncbddd/blooddisorders/index.html
https://www.hematology.org/education/patients/bleeding-disorders