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. 

I'm A Recovering Bad "Consumer" - Part 1

       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!  

Rare Disease Day 2013 - Video Thursday

      Whenever I tell someone my son has hemophilia, it never starts with..”It’s a rare disease.   I just always say, "It's a bleeding disorder".  But in actuality, it is a rare disease.  I am use to hearing the term disease to describe an illness a person catches, but not one they are born with.   A disease in fact is more than just something someone can catch, but it is defined as: an abnormal condition that affects the body of an organism.

      In the United States a rare disease is defined as any disease affecting fewer than 200,000 people. Since Hemophilia only affects 20,000 people in the U.S., it is considered a rare disease. In a need to join the community of over 7,000 other diseases that affect people in the world, Rare Disease Day was formed.   Rare Disease Day is a celebration to bring attention to these rare diseases and bring the different diseases together, across borders, to have a stronger voice and encourage research, education and funding.

      My video today was created by the Hemophilia Federation of America representing the hemophilia community in that celebration:

                     Rare Disease Day 2013 from Hemophilia Federation of America on Vimeo.

     This is the first year I've heard of Rare Disease Day and next year I hope to do more to spread the word.  I did email my newspaper, but they did not respond.  I also sent the online letter to my State Representatives.  Next year I want to do more.

Do you have a "Date Night"? - Video Thursday

    

     Today is Valentine's Day!  The day we look to our husband or significant other for a special kiss or a special gift.  If your lucky you may even get taken out for a meal, which means no cooking tonight for you!!  My husband and I don't do anything big for Valentine's Day.  He usually gets me a card from him and one from the kids. 

    

Today I stuck a little note in his lunch:

                    Roses are Red,  

                    Violets are Blue.

                    Even though you snore,

                   I want to spend the rest of my life with you!

He swears I snore louder than him.  Sometimes we record it, but the jury is still out! 

NHF Washington Days - Video Thursday

    

    
     The National Hemophilia Foundation annual Washington Days is planned for Wednesday, February 27 - March 1 to continue to advocate for the bleeding disorder community.  I've never attended Washington Days and wanted to this year, but financially I can't.  However, I am going to participate for the first time in my local chapter State advocacy day next month!  I'm registering for that today and will take my oldest son Marques, so he can begin to understand what goes into him having access to medicine.

     Obama's health reform has really put our community in a better position with insurance companies to continue to provide our son's with a "normal" life.  I watched a hemophilia video before that reported that it could cost as much as $10,000,000 for a lifetime of factor since hemophiliacs are living longer and need to take factor at least 3x per week!  Hence the term, "Million Dollar Babies", my Dad would use.  I know insurance companies will continue to fight that and Medicare will not want to keep covering that cost in their budget.