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

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. ...

This is a write up I did for BleedFree, Inc. back in January. . . Hello my name is Kari Peepe and I have Platelet Storage Pool Disorder.  Sometimes I feel like I should come with a stamp, that says WARNING! When my daughter and I got diagnosed with the rare bleeding disorder-PSPD. . . I've never felt so alone. The Dr.'s made me feel like our lives would change forever and that our daughter would never live like a "normal" child.  So I walked away from that first appointment picturing a life full of Dr's appointments, bleeding episodes, medications, and a lot of trips to the ER. Not to mention all my fears about the social impact this would have on her, once she reached grade school. But. . .  What I didn't foresee, was the friendships that I would find. My bleeder buddies have become such a huge part of my life, sometimes I forget that I've never even met these "friends" before. Friends I've known forever have slowly drifted away, an...