I'm A Recovering "Bad Consumer", Part II

    In Part 1, I confessed to not staying up with the NHF updates and not knowing about the Standard of Care to expect for my son.  I always depended on my Father for information.  After he died, so did the information.  My father was my resource and my first call if I thought my son had a bleed. 

Hemophilia of South Carolina Symposium meeting 2012

 

     My father was very involved in the Hemophilia Association of New Jersey, so I went to events with him, but never joined as a Mother of a son with hemophilia.  When we moved to SC, I attended my first family weekend Symposium with him and took my family.  Now that I reflect back, it was still as his daughter but not as my son's Mother.  I don't know if that makes sense, but he was my source of information and my guidance of how to care for my son.  So, when my father died...so did my information as well as my relationship with any hemophilia Chapter. 

 

     For the first 3 years after my father's death,  I didn't think about how important it was to be involved in the hemophilia community.  This blog grew out of a loneliness and a craving for information, especially after I had my second son with hemophilia and he started having bleeds.  Once I started writing and researching information, I realized that it was a community out there...I just didn't belong.  I also didn't realize that not belonging, meant not being counted.  I was being a "Bad Consumer".

     Since I go to a Hematologist and not a HTC, I was not being counted as a member of the hemophilia community.  Not being counted meant we are not part of the CDC Universal Data Collection System used to research and understand issues across the lifespan of a person with a bleeding disorder.  Also I have learned, not being counted at an HTC means less funding from the CDC to provide this specialized care.  I found out that I only need to go once a year to be counted and can still be seen by my Hematologist.  Also, a person with a rare disease needs to be counted.  I think strength comes in numbers when you are fighting for government programs or showing the number of people these programs are helping.

 

     Knowledge is definitely power.  In my recovery to become a "Good Consumer", I'm going to take the boys to visit a HTC.  For the past two years, I also joined my South Carolina chapter and I attend as many events as I can.  I also jointed the North Carolina Chapter recently, since I live on the boarder of both states.  I figured, I should be able to attend any program that was close to me.

     Have you found it important to stay involved with your local Chapter and attending an HTC?