• LIFE WITH INHIBITORS
  • JUST LIKE YOU
  • ELECTIVE SURGERY
  • THE COALITION
  • SUPPORT PROGRAMS
  • RESOURCES
  • CHANGING POSSIBILITIES


 
 

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    A message of hope for the inhibitor community

    As an adult with an inhibitor, I have been through a lot. As a child, I was told I would not live to be an adult. I was told I would be in a wheelchair. I was told not to bother going to college. I saw my brother become afflicted with HIV and pass away. Twice, I have been told that I was not going to live.

    These are amazing stories to people who do not know about inhibitors. To an adult with inhibitors, this type of story is fairly common.

    But in spite of having an inhibitor, my life has been filled with wonderful things. My wife, Laurie, is the love of my life. She has given me invaluable support dealing with inhibitors.

    We were told that we could not have children. That turned out to be wrong as well. We have a beautiful daughter, Rebekah, who is now 20 years old.

    I have also learned that I have a lot to offer. When I was young, I left the hemophilia community. As a person with inhibitors, I felt I did not belong. I also found it depressing. I did not want to be reminded that I was sick. I stopped going to chapter meetings. I did not want anything to do with hemophilia.

    In recent years, I have become involved with the community again. It has been very rewarding.

    I attended one of the Inhibitor Education Summits. I met many people with inhibitors. I found I was able to offer advice to new parents and young men dealing with inhibitors. I was asked to lead a workshop at a summit the next year.

    I also joined the Novo Nordisk Consumer Council. Working with this group has been tremendous. Together with Novo Nordisk, we have been able to help people with inhibitors. We have created educational brochures and programs. We have made a difference. We are changing possibilities in hemophilia.

    Today, I'm a proud member of The Changing Possibilities Coalition. We are creating a unique community. We need every voice in the inhibitor community to be heard—especially yours.



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