WFH NETWORK

My Experience at the World Hemophilia Congress

Recipient of the 2010 Susan Skinner Memorial Fund Scholarship

Thomas Skinner, Danielle Schwager

Hello! My name is Danielle Schwager, and I am a 23-year-old woman with hemophilia B. I was diagnosed at the age of 11 after hemorrhaging for 10 days due to having four teeth pulled. I am what is termed a "symptomatic carrier" of hemophilia B, which means that genetically I have one X chromosome that carries the hemophilia B mutation (affected X chromosome), while the other X chromosome does not. However, the affected X chromosome is expressed in more than 50% of my cells, so I physically express symptoms of the bleeding disorder.

My family has been a member of the Northern Ohio Hemophilia Foundation for many years, and I have become involved as a young adult over the past three years. I am a member of the Women’s Task Force that was founded in 2007, interned for NOHF from 2008 to 2009, volunteered for the Youth Golf Program, planned and/or participated in two successful Hemophilia Walkathons, as well as attended local, national, and international meetings.

I was one of three women to receive a scholarship through the Susan Skinner Memorial Fund to attend the 2010 World Hemophilia Congress this past July in Buenos Aires, Argentina. Attending this international conference was an eye-opening experience. I met other women from the United States with bleeding disorders that I could relate to in terms of personal and community experiences. I also made new friends from around the world who taught me about the bleeding disorders community in their countries, and how individuals and families in their communities cope with diagnoses, treatment, and day-to-day living. It was very interesting to learn that the desire to educate others about women and bleeding disorders is now an international movement, and specifically an international goal of the World Federation of Hemophilia president Mark Skinner.

This was such a wonderful and humbling experience for me, and I hope to attend more international meetings in the future. Attending this conference motivated me to do as much as I can for the bleeding disorders community, as it consists of individuals that truly care about the well-being of one another. I encourage each and every one of you reading this article to experience an international meeting, and I hope that it has a lasting effect on you. It is by working together that we can make this world a better place for those affected by bleeding disorders.


By Danielle Schwager
December 2010