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

I started my blog almost 1 year ago and I would be lying if I say it hasn't changed my life.  The amount of people I've connected with and been able to share my stories with has given me a sense of belonging and purpose for the first time ever. I take pride in saying that I've opened the eyes of thousands of people to the rarely diagnosed Platelet Storage Pool Disorder and I know sharing our story is making a difference. I'm so thrilled to announce that I now have a new forum to help raise awareness of PSPD and the daily worries and lessons that comes a long with it.  I'm one of the new proud bloggers for  Infusing Love on the Hemophilia Federation of America web site - A blog dedicated to moms of children with bleeding disorders. In my first blog I speak about our initial diagnosis and the  Fear of the Unknown .  Please check it out and share it with others and take your part in helping spread awareness. Written by, Kari Peepe pspdaware@gmail....

Since Scarletts diagnosis of the rare Platelet Storage Pool Disorder. . . I've definitely felt like I had to defend our disorder .  There's often the misconception that I'm over reacting and making a bigger deal out of our bleeding disorder than necessary.  Sometimes I feel like people don't understand I'm fighting for her life each day. . . Each and every moment I spend with her I'm trying to prevent her from getting an injury . . . On most days this leaves me feeling emotionally and physically exhausted and I feel like a lot of people will never understand the daily rituals that we've had to take to keep Scarlett safe.  They don't understand that all though Platelet Storage Pool Disorder may not be considered terminal . . . IT IS CONSIDERED LIFE THREATENING. I've had a few people say to me things like "I didn't know her situation was so serious. . . I mean is it considered terminal?" and my response to that, is this . . . all tho...