Mother & Daughter Diagnosed with Platelet Storage Pool Disorder

By Kari Peepe
RARE Parent, Patient

My daughter and I were both diagnosed with a rare storage pool disorder in 2012. She was two at the time and covered in bruises from learning how to walk and I’d been having signs of a bleeding disorder my entire life — nose bleeds, unexplained bruising, petechia, and extreme bleeding during dental work.

Platelet Storage Pool Disorder is a rare bleeding disorder that would keep my daughter from playing any contact sports, require her to be accompanied by an aide on the playground, and have a life of restrictions.

Shortly after our diagnosis I started sharing our story in hopes of finding a treatment plan for those with storage pool disorders, finding others like us and raising awareness of this rare bleeding disorder. Through our journey I’ve also put a lot of focus on the signs and symptoms associated with being a female with a bleeding disorder and am constantly advocating for the woman of the community.