March 2013 - Hemophilia Month

The month of March has a few health observances such as American Red Cross Month, Brain Injury Awareness Month, National Colorectal Awareness Month and Workplace Eye Wellness Month to name a few. Our focus for the month of March is Hemophilia Month. Hemophilia month is sponsored by The National Hemophilia Foundation.

Hemophilia is defined according to the National Hemophilia Foundation as a genetic bleeding that prevents normal blood. Uncontrolled and spontaneous bleeding is the main symptom of hemophilia. There are two types of hemophilia, A and B. Hemophilia A is a deficiency of clotting Factor VIII (factor 8). The recessive trait located on the X chromosome causes hemophilia a. Hemophilia B also known as “Christmas disease” is a result of a deficiency in factor IX. Although there is no cure currently for hemophilia there are treatments that help prolong the lives of those infected with hemophilia through infusion of manufactured human plasma or using recombinant technology.  “Hemophilia occurs 1 in 5,000 live male births, of these 80% are hemophilia A and 20% are hemophilia B.” (The National Hemophilia Foundation, 2013).

von Willebrand disease is another bleeding disorder that prevents blood from clotting and is genetically based. Affecting both men and women, “von Willebrand factor which is a protein that affects platelet function.” (The National Hemophilia Foundation, 2013). This disease has three categories type 1 is the most common and mildest form of the disease. Type II where von Willebrand disease has sub classifications of IIa and IIb. “In Type IIa, the level of von Williebrand factor is reduced as is the ability of platelets to clump together.” (The National Hemophilia Foundation, 2013). “In Type IIb, although the factor itself is defective, the ability of platelets to clump together is actually increased.” (The National Hemophilia Foundation, 2013). Type III is severe von Williebrand disease. “These people have a total absence of von Williebrand factor and factor VII levels are often less than 10%.”(The National Hemophilia Foundation, 2013).

Hemophilia related HIV/AIDS occurred when factor products were created in the late 70’s and early 80’s from human blood. Some of those donations came from people who were infected with the HIV virus and this resulted in about 60% of hemophiliacs that were treated with the contaminated blood products contracting the HIV virus. Today most of the blood products are man-made.

In the state of Arizona there is an agency that can help hemophiliacs. The Arizona Hemophilia Association located in Phoenix, Arizona has programs to help hemophiliacs and their families. Youth programs such as HAPY (Hemophilia Association Program for Youth) is an educational and recreational program for ages 8 to 15 that helps build self-esteem and increases the knowledge of bleeding disorders. HAPY Jr. for ages 4 to 7 was created for younger children to learn about hemophilia on their level. Lastly EPIC is where teens learn about hemophilia.

There are camp programs where children can go for a week to have fun, learn, and make new and lasting friendships.

There are educational outreaches that can help with finding health insurance, medical treatments, and educational programs for the families. An annual women’s retreat that focuses on daughters, sisters, wives, and mothers who have inherited bleeding disorders. Emergency financial assistance is also available to families in need. Educational scholarships are available through the Arizona Hemophilia Association for students. There are also client services available to hemophiliacs from various places within the state of Arizona. The Thrombosis Center is located in Tucson, Arizona deals with bleeding/clotting disorder management, outpatient and inpatient care, and care of person and families with thrombophilia. The treatment center at Phoenix Children’s Hospital serves children and adults with bleeding disorders as well as children with clotting disorders.

Hemophilia although a very frightening disease is very much controllable. Just as we highlighted the Arizona chapter that deals with hemophilia issues there are chapters nationwide that can help people in other states. Check out the National Hemophilia Foundations page to find the chapter for your state.

 

Reference: The National Hemophilia Foundation (2013). Fast Facts. Retrieved online February 27, 2013. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=259&contentid=476