Community Health Charities of Florida - April 2011

World Hemophilia Day

Created in 1989 by the World Federation of Hemophilia, April 17th is World Hemophilia Day. WFH is an international nonprofit organization dedicated to improving the lives of people with hemophilia and other bleeding disorders.  The day is recognized by bleeding disorders organizations across the globe, including Community Health Charities member agency National Hemophilia Foundation (NHF) in the United States.  This one-day event promotes awareness of people with hemophilia and other bleeding disorders, and their need for quality care and treatment. This year’s theme is  “Be inspired, get involved in treatment for all.”

Hemophilia is a hereditary genetic condition that occurs in an estimated 1 in 5,000 live male births. It can occur in females, but rarely. There are approximately 20,000 people in the United States with hemophilia, and about 400,000 worldwide. The two main types are hemophilia A, or factor VIII deficiency, and hemophilia B, or factor IX deficiency.

Contrary to popular belief, people with hemophilia do not bleed faster than other people, but they do bleed longer. Their bodies do not produce enough clotting factor protein, which is needed to form and sustain blood clots. Patients are described as having mild, moderate or severe hemophilia, depending on the level of clotting factor in their blood.

People with hemophilia are prone to internal bleeds in their joints and muscles. Nosebleeds and mouth bleeds can also occur. Head bleeds, usually as a result of trauma, can be life-threatening and prompt medical attention is important.

Hemophilia can be managed using prophylaxis, regular intravenous infusion of the missing clotting protein, typically two to three times weekly. By keeping a steady level of the clotting protein in the blood, patients are prevented from developing bleeds, which can lead to complications such as joint damage and disability. However, some people develop inhibitors, antibodies to the infused clotting protein. Treatment for this condition can involve immune tolerance induction, similar to allergy desensitization, or use of a bypassing agent.

In the 1970s, the Centers for Disease Control and Prevention helped establish a network of hemophilia treatment centers (HTCs) across the U.S. These centers offer comprehensive care to patients with hemophilia and other bleeding disorders. Most patients visit their HTC once or twice yearly. During their visit they see healthcare providers who specialize in treating people with bleeding disorders – from hematologists and nurses to physical therapists, social workers and dentists.

The National Hemophilia Foundation has a network of chapters across the country that provides support and resources for families living and coping with hemophilia and other bleeding disorders. Many chapters work with their HTCs to host educational meetings and camp programs. Through a national walk program, NHF is raising funds for research for better treatments and a cure.

HANDI, NHF’s information resource center, is the place to go for personalized information. HANDI’s staff fields calls and e-mails from patients and parents, families and friends, and healthcare providers around the world. Information is shared electronically and via packets of materials sent to people’s homes.

NHF educates and informs the bleeding disorders community through HemAware, its online and print magazine. Articles are directed at the patients and families with bleeding disorders and cover everything from needle phobia in kids to caregiver burnout, transitioning to college and issues of aging.

On April 17, NHF will partner with WFH to spread the word about the condition of people with bleeding disorders throughout the world. Although most patients in the U.S. have access to care and a variety of treatments, that is not the case globally. Approximately 70% of patients with hemophilia living in other countries do not have access to treatment. Until they do, NHF will continue to help raise awareness of the plight of people who need better treatments to prevent complications that can lead to disability and, in some cases, death.

To learn more about World Hemophilia Day, please visit www.wfh.org or the National Hemophilia Foundation at www.hemophilia.com. You may contact  HANDI, NHF’s information resource center, at 1-800-42-HANDI or handi@hemophilia.org.  

To read the latest issue of HemAware, please visit www.hemaware.org.

Click here to watch a video podcast on hemophilia.

Source: National Hemophilia Foundation