Gary Barg: Tell me about the goal of Hemophilia Federation of America and your services and programs.

Kimberly Haugstad: Our mission is to assist and advocate for people with bleeding disorders. We are first and foremost an advocacy-based organization, and that could be from a legislative or regulatory and administrative perspective or from a personal perspective. We are not representing anything except the patient families. From a social perspective, that includes education on living and coping with and understanding your disorder.  It includes peer networking to bring folks together on a regular basis.  And we invite folks to come and get involved and be a part of this community and learn and then share with others.

Gary Barg: What is hemophilia? 

Kimberly Haugstad: Hemophilia is a bleeding disorder and essentially your ability to clot is compromised because one of the clotting factor proteins that is in your blood is missing or it is limited in its expression. A person with hemophilia is unable to completely form a clot and, therefore, any type of injury, untreated, can go on continually."

Gary Barg: And are there differing levels of severity?

Kimberly Haugstad: Yes. There are three different levels of severity within hemophilia. Severe is the most serious one, and essentially it means that there is no clotting factor protein in your body. A person with moderate hemophilia is going to have a little different experience. They are going to have some expression; and someone with mild usually is going to have more expression, but still not fully expressed factors. So you still will have bleeding issues even in the mild form. 

Gary Barg: Can you explain the different types of hemophilia?  

Kimberly Haugstad: Hemophilia A is the most common form. There are perhaps twenty thousand folks in the United States with hemophilia A. About three thousand folks in the United States are living with hemophilia B and there also is a hemophilia C, as well as several other bleeding disorders such as von Willebrand disease which affects millions of folks in the United States...read more