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HELP WANTED: Seeking Dr who gives a shit . . .

I went to yesterday's genetic specialist appointment hoping they would be able to give me some insight into why I have this rare bleeding disorder. . .  where I inherited it from and how my children and my children's children will be affected by this. . . I came out of the appointment with literally no new information and feeling more alone than I've ever felt since being diagnosed with Platelet Storage Pool Disorder.  Up until this point I've seen a specialist in Kaiser Santa Rosa, Kaiser San Francisco and Stanford Medical Center all in hopes of finding someone who gives a shit enough to help me find some more answers. There simply has to be people out there researching this disease if it's listed under the umbrella of Hemophiliacs, where are they and how do I get hold of them?
Because there are no other cases to go off of. . . much of the decisions being made about Scarlett and I are based on how to treat a Von Willebrands patient yet scientifically/biologically speaking, we are being told we are nothing like Von Willebrands patients.  Fortunately the meds they have given us for Scarlett's minor injuries have proved beneficial but we will never know for sure if the Factor 7 shot we have on hand for major injuries will actually work, until we have to use it.   I know the Dr's are doing there best with the little information out there about PSPD, but I fear lack of knowledge could result in a horrible situation.   It seems obvious to me that the precautions we took during the delivery of my son didn't prevent massive bleeding . . . with several platelet transfusions I still lost 1/3 of my blood and ended up in the operating room.
Going into this appointment I was confident that I would come out of there knowing more about my disorder and be able to help shed some light on how to go about dealing with Scarlett over the next few years. . . . and unfortunately I was wrong.  The Dr kept telling me the only way I was going to get research done specifically on PSPD was to start a foundation that was based just on Platelet Storage Pool Disorder and not under the umbrella of hemophiliacs.  I'm sitting there thinking, I'm a preschool teacher living in Sonoma County with a family of 4. . . . I don't have the financial means to just start up a foundation. . . AND where the hell would I send the money once I raise it? There's no one out there researching this rare disorder?
Being told that they can't find any other case studies of someone with PSPD in the last 10 years that I hadn't already read myself was disconcerting and left me feeling like I have a long road ahead of me to get this disease known and treated correctly and I JUST HAVE TO FIND SOMEONE INTERESTED ENOUGH to take on this case and be willing to be in it for the long haul.  I'm very grateful for the diagnosis' that have been made by medical team and by no means are saying they aren't doing their job. . . I'm sure they are just as frustrated as me that they cant find much info about it . . . I just need more Dr's willing to fight for this disorder and get more research done on it.
So all I can do now is share my story and hope that eventually our story will reach the right hands. . . until then I hope you can help me by reading<sharing<follow our story and support us on this journey! Please read more of our story and find out ways to help donate to starting a foundation at http://atouchofscarlett.blogspot.com


Written by,
Kari Peepe


 ©KariPeepe/atouchofscarlett.blogspot.com
http://atouchofscarlett.blogspot.com

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