A Touch of Scarlett, our journey with a rare bleeding disorder

As I was sitting at the computer the other day preparing for an upcoming interview I have about life with a rare bleeding disorder, Scarlett sat down beside me and started reading the questions. As she started to answer them back I felt compelled to write it down. . . . Her answers were too cute and insightful not to share and so I decided to include them on my blog. A few details about your life: Your age now, where you live, what you do, hobbies, etc.   My name is Scarlett and I am 7 yrs old. My favorite animal is a zebra. My favorite color is yellow. I make my Mom happy by giving her massages with my brother. When I was in class one day we were doing math and I did really good because I did every single one in a really fast amount of time. If I had a pet kitten I would feed it and comb it and I would do the same with my other pets too. My editor said you have a storage pool / platelet disorder — is that correct? What’s the name of the disorder? Please tell me a little bit...

I recently returned from St.Louis, Missouri where I attended my first HFA Symposium. Our conference took place at the beautiful  Hyatt in St.Louis under the arch.   It was there, I was able to make connections with other bleeders by sharing our stories. My husband was lucky enough to be able to join me and we were blessed to enjoy a wonderful blend of learning, advocating, and networking all while enjoying a mini-vacation to somewhere we had never been. This years Symposium had a large focus on Blood Sisterhood, which is a portion of HFA,  I'm truly passionate about. The number of women bleeders in this community is only growing and I believe we are on the brink of even more being diagnosed. Women are taking a stand and demanding better resources for a faster and smoother diagnosis as well as a realistic treatment plan. I was going into the weekend excited to networks with others and get females in the community what we deserved as patients and care givers. ...