To honor Hemophilia Awareness Month, HFA will post a fact each day to bring awareness and attention to those living with a bleeding disorder:
March 1st fact: In the United States, approximately 20,000 people are living with hemophilia and 1-2% of the population is living with von Willebrand Disease: http://tiny.cc/qys9sw
March 2nd fact: In 1986, President Ronald Reagan designated the month of March as Hemophilia Awareness Month to bring attention to those living with a bleeding disorder. Read the original proclamation here: http://tiny.cc/xwubtw
March 3rd fact: Hemophilia is when a clotting factor (protein in the blood) is missing. A person with hemophilia bleeds longer than others, not faster. Hemophilia cannot spread like a virus or an infection. Currently there is no cure, but there is treatment: http://tiny.cc/oendtw
March 4th fact: Hemophilia is an X chromosome linked condition. Carriers (women/mothers) have a 50% chance of passing the gene onto to either their male or female offspring. Fathers, who are affected with hemophilia themselves, will pass the gene on to all of their daughters, but not their sons. Hemophilia affects 1 in 5,000 male births in the U.S., and approximately 400 babies are born with hemophilia each year: http://tiny.cc/uthftw
March 5th fact: The earliest possible reference to hemophilia may have been in the Talmud, a Jewish holy text, which states that if a woman had two sons that died from circumcision, her third son would not be required to have the procedure. Hemophilia played an important role in Europe’s history, when the children of Queen Victoria were born with it, thus naming it “The Royal Disease.” Read more about the history of hemophilia from The National Hemophilia Foundation: http://tiny.cc/wi9gtw
March 6th fact: Approximately 30% of people with Hemophilia A, and 2-3% of people with Hemophilia B, will form an inhibitor to the medicine (called factor) that is used to prevent bleeding. Inhibitors are antibodies that the immune system develops to destroy the factor before it has time to stop the bleeding. Developing an inhibitor is one of the most serious and costly complications of hemophilia: http://tiny.cc/ladjtw
March 7th fact: Von Willebrand Disease (vWD) is the most common bleeding disorder (1-2% of the world’s population), and affects males and females equally. Many people with vWD are under or misdiagnosed because of mild symptoms. Those with vWD have lower or malfunctioning von Willebrand factor activity, and thus cannot form a proper platelet plug. To be more inclusive, March should be called, “Bleeding Disorders Awareness Month:” http://tiny.cc/dawktw
March 8th fact: A person with hemophilia may use the following words to describe what internal bleeding feels like in a joint or a muscle: intense pain, burning, bubbling, or tingling (like when a body part ‘falls asleep’). The area may become swollen and sometimes the skin is red, warm, and shiny: http://tiny.cc/naxmtw
March 9th fact: He·mo·phil·i·a [pronounced: hee-muh-fil-ee-uh] is the standard international spelling. However, in the United Kingdom it is known as, haemophilia. Other translations include: emofilia, hémophilie, hemofilia, hemofili, hemofilie, hmophilie.
March 10th fact: When there is an injury, the capillaries (the bodies smallest blood vessels) tighten to help slow down the bleeding, and blood cells called platelets create a plug. A fibrin protein (also known as clotting factor) then works to stop the bleeding. People with hemophilia can make the platelet plug, but not the fibrin. Depending on the severity of hemophilia, the platelet plug is sufficient for smaller cuts and scrapes, but not with internal injuries to larger muscles or joints.
March 11th fact: With proper treatment, people living with a bleeding disorder can lead managed lives. Without it, many suffer severe debilitations or die young. Worldwide there are an estimated 6.9 million people living with a bleeding disorder (400,000 with hemophilia); tragically 75% remain undiagnosed, receive inadequate or no treatment at all. Learn more about bleeding disorders in the developing world from the World Federation of Hemophilia: http://tiny.cc/cu9rtw
March 12 fact: According to National Organization for Rare Disorders, Inc. (NORD), a disease is considered rare if it has fewer than 200,000 Americans. Hemophilia A (factor VIII deficiency) and Hemophilia B (factor IX deficiency) are one of them. However, there are many other rare clotting factor deficiencies and platelet function disorders like: Factor I, VII, X, XI, and XIII deficiency, Bernard-Soulier Syndrome and Glanzmann’s Thrombasthenia. Unlike hemophilia, most rare factor deficiencies occur equally among men and women: http://tiny.cc/eh4ttw
March 13th fact: When a child is diagnosed with a chronic condition, like hemophilia, it affects the family dynamic. Sometimes unaffected siblings may feel resentment, left out , jealous, scared, and confused with the situation. These feelings are likely to result because one child may receive more attention from others within the family and community: http://tiny.cc/dxzvtw
March 14th fact: The Lone Star Chapter of the National Hemophilia Foundation founded the Bleeding Disorders Legal Information Hotline to help people living with a chronic condition, like hemophilia, obtain information about legal rights, health insurance, and issues related to work and school. This service is free and confidential: http://tiny.cc/suqxtw
March 15th fact: According to the CDC, between 1978-1984, approximately 12,000 people contracted HIV from contaminated blood transfusions. This resulted in 90% of Americans with severe hemophilia to be infected with the HIV virus, which accounts for nearly 70% of the total hemophilia population. Tragically, more than 50% of those infected have since died. “Bad Blood: A Cautionary Tale” is a powerful documentary that was recently released to tell this story through the eyes of survivors and family members, to educate others about this tragedy, and to ensure this never happens again. This film is currently on Netflix and more information can be found here: www.badblooddocumentary.com
March 16th fact: Hepatitis C (HCV) is often referred to as “the silent killer,” affecting an estimated 3.2 million Americans. Nearly 90% of people with hemophilia who were infected with HIV from contaminated blood products, were also infected with HCV. Watch this video to learn more about the leading cause of death for adults with hemophilia, and how hepatitis C continues to affect their lives: vimeo.com/36791500
Current treatments for HCV are often grueling, long, and ineffective. Pharmaceutical companies, like Gilead Sciences, are are withholding medical advancements for hepatitis C treatments. Please consider signing and sharing this new petition asking the White House to force companies to move forward with the development of a new and effective therapy: http://hepc-cured.com/
March 17th fact: If you are in need of an article, brochure, or booklet to learn more about bleeding disorders, the National Hemophilia Foundation has a resource center called HANDI. This resource library contains more than 13,000 items that include: medical article reprints, educational publications, videos about self-infusion, information on psychosocial issues, bleeding issues with women, blood safety, and much more. These useful materials are free to patients with a bleeding disorders: http://tiny.cc/zfm3tw
March 18th fact: The Patient Notification System is a free, confidential, 24 hour communication system that provides vital information to the bleeding disorders community on plasma-derived and recombinant factor therapy withdrawals and recalls. Learn more about this system led by by Plasma Protein Therapeutics Association (PPTA) and how to register for updates: http://tiny.cc/mke5tw
March 19th fact: Moderate physical activity and proper nutrition helps to maintain a healthy lifestyle for people with a bleeding disorder. A regular and safe exercise program protects the joints and can even help decrease bleeding episodes. HFA’s FitFactor program offers the community free fitness video podcasts, support in tracking physical activity, and ideas for dietary meal plans. Learn more about the FitFactor program: http://tiny.cc/gs56tw
The National Hemophilia Foundation has created an informative resource called, “Bleeding Disorders, Sports, and Exercise,” to help patients better understand the risks and benefits about physical activity: http://tiny.cc/6d66tw
March 20th fact: Health care costs associated with bleeding disorders, especially hemophilia, are staggering and can be a heavy financial burden on patients and their families. The treatment of hemophilia ranks among the most expensive chronic conditions in the United States, averaging from $150,000 to $350,000 per patient annually: http://tiny.cc/2238tw
March 21st fact: The high cost of college often makes students question whether they want to further their education. The bleeding disorder community offers many scholarships for patients, parents, and siblings living with or affected by a bleeding disorder. Each year, HFA awards ten $1,500 scholarships to promising students in the community. For more information click this link for a complete and current list of all the other scholarships that are available: http://tiny.cc/xaqauw
March 22nd fact: Medical ID’s are a critical component to a person with a bleeding disorders overall health and safety. First responders are trained to look for medical ID’s (like a necklace, bracelet, or other identifying tag) during an emergency to rapidly provide appropriate and emergent care. Learn more about the importance of medical ID’s and how to purchase them by visiting, Medic Alert: http://www.medicalert.org/
March 23rd fact: Many people living with a bleeding disorder experience pain caused by bleeding into joints and muscles. A recent study reports that 89% of adults with hemophilia experience significant problems with sleep, attendance at school/work, performing daily activities, or depression because of pain. Many patients also say it’s not easy to tell whether the cause of joint pain is arthritis or a bleed. Learn more about the symptoms and effective treatments of chronic and actue pain:http://tiny.cc/rfppqw
March 24th fact: Medical studies acknowledge that laughter can help improve the quality of life for patients with a chronic condition. Laughter is a natural medicine and a contagious emotion. For people living with a bleeding disorder, laughter can help be a diversion, reduce stress/tension during a bleed, promote relaxation, improve sleep, and strengthen relationships:http://tiny.cc/jxnguw
March 25th fact: Adolescence can be a difficult time of transition for someone living with a bleeding disorder. Research shows teenagers sometimes feel isolated, overprotected, and may experience anger or denial. Last year during HFA’s Symposium, the teens created this short video about what a bleeding disorder means to them and how they’re just regular teenagers:http://tiny.cc/fx9huw
The CDC offers an educational and interactive tool for parents and patients about issues adolescents with a bleeding disorder might face, and the psychosocial implications: http://tiny.cc/ty9huw
March 26th fact: About 70% of people with hemophilia in the U.S. receive multidisciplinary, comprehensive care in a network of federally funded Hemophilia Treatment Centers (HTCs). This includes access to hematologists, nurses, social workers, physical therapists, and orthopedists. According to Blood, the Journal of the American Society of Hematology, mortality and hospitalization rates for bleedingcomplications were 40% lower among people who received care in HTCs than those who received care elsewhere: http://tiny.cc/z31juw
A new project called CHOICE (Community Having Opportunity to Influence Care Equity), driven by HFA and supported by the CDC, collects information regarding health experiences of people who have a doctor-diagnosed bleeding disorder, and do not receive care at a federally-funded HTC. Learn more about the CHOICE project: http://tiny.cc/a61juw
March 27th fact: Summer camps for kids with a bleeding disorder and their siblings, promote independence, leadership skills, and fosters camaraderie with others in a secure and safe environment. Many parents say that allowing their children to attend camp was one of the best decisions they ever made, because it encourages their child to take ownership of their condition by learning how to self-infuse. In this week’s post of, “Infusing Love: A Mom’s View,” our resident blogger talks about the benefits of camp and how her children emerged from this experience as stronger and more self-reliant: http://tiny.cc/pd1luw
Learn more about a camp near you from this comprehensive national list from the National Hemophilia Foundation: http://tiny.cc/gg1luw
March 28th fact: Hemophilia is carried on the X chromosome. A women who is a carrier for hemophilia has the genetic mutation on one of her X chromosomes. Many are surprised that these women may present symptoms of hemophilia and in some cases, be clinically proven to have it. Approximately one third of women are symptomatic carriers, meaning their clotting factor levels are less than 50%, causing them to experience symptoms similar to a male with mild hemophilia: http://tiny.cc/5dtnuw
March 29th fact: The Hemophilia Federation of America is one of 3 national organizations advocating, educating, and raising awareness for the entire bleeding disorders community, like hemophilia and von Willebrand disease (vWD).
Hemophilia Federation of America (HFA): A grass-roots national non-profit, incorporated in 1994 to address the evolving needs of the bleeding disorders community. HFA advocates for safe blood products, affordable health coverage, and a better quality of life for all persons with bleeding disorders. HFA is located in Washington, DC:www.hemophiliafed.org
National Hemophilia Foundation (NHF): A national non-profit established in 1948 to find better treatments and cures for inheritable bleeding disorders and to prevent the complications through education, advocacy and research. NHF is located in New York City: http://www.hemophilia.org/
Committee of Ten Thousand (COTT): A grass-roots organization that is peer-led to educate, advocate, and support persons with hemophilia who contracted HIV/AIDS from tainted blood products in the 1980′s. COTT is located in Washington, DC: http://www.cott1.org/
March 30th fact: One of the most crucial things to do after receiving a diagnosis of a chronic condition, like hemophilia, is to become educated and connected to the bleeding disorders community. HFA is devoted to provide a better quality of life for people living with bleeding disorders. Our programs like Fit Factor, Blood Brother and Sisterhood, Helping Hands, Dad’s in Action, and our new Mom’s initiative, are designed to help the community stay healthy, informed, and supported. Learn more about HFA’s programs and how to get involved: http://tiny.cc/83eruw
March 31st fact: To observe March as Hemophilia Awareness Month, a fact was posted each day on social media to to help educate and raise raise awareness about bleeding disorders. The response has been incredible! As a result of you sharing this information with your family and friends, over 300,000 people saw something related to Hemophilia Awareness Month! If you missed a fact, you can find each of them listed here: http://tiny.cc/0h2puw.
