|Hemophilia of South Carolina Symposium meeting 2012|
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.
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.
At the Hemophilia of South Carolina 2012 Educational Symposium Family Weekend the fact hit me that I was a bad "Consumer" in the Hemophilia Community. First let me say, I've heard the term "Consumer" before, but I thought it just meant I was a consumer of blood products. But the word "Consumer" means so much more!
Michelle Rice, Director of Public Policy NHF, explained how to be a "Good Consumer". At the symposium we learned: A "Good Consumer" is educated and informed, not only about their bleeding disorder but about the rules and standards that apply to the various members of their care team (pharmaceutical companies, specialty pharmacies & medical professionals).
Now, I was knowledgeable about the care I needed for my son: factor, supplies and doctor appointments. That is all I thought I needed to know about!