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

My husband and I had always said we wanted 2 kids at the least, ideally three.   But that's no longer in the cards for us......After the birth of my second child the Dr's said "I'M SORRY, YOU SHOULD'NT HAVE ANYMORE KIDS!" I would still choose to describe my first delivery as " a piece of cake" .   I hadn't been diagnosed with Platelet Storage Pool Deficiency yet, so I went into delivey very confident everything was going to be fine.  My family and I had warned the Dr's that we thought I had a bleeding disorder, but beyond that no precautions were put into place. So, when we got to the hospital at @7:30 am and delivered the most precious baby girl by 11:30am with no drugs, what seemed like a few pushes, and (what I was calling) normal blood loss, I was very confident I could do this again.....and again......and again!  Now don't get me wrong, my first delivery was scary......it just wasn't as obvious at the time.  My daughte...

Platelet Storage Pool Disorder(Deficiency) is a rare bleeding disorder that cause Pistaxis(bleeding from the nose), Menorrhagia (heavy mentstrual cycles), extensive bruising, and surgical and obstetric bleeds. It's so RARE that it's really hard to get any concrete answers about a life plan after diagnosis.  Anytime I meet with Dr's. . .I've read the same article, heard the same statistic, or seen the same puzzled look on one's face.  It truly is an undiscovered disorder growing in diagnosis, yet nobody is willing to take on such an immense research project to find out more answers. Platelet Storage Pool Deficiency is described as a RARE platelet abnormality  that causes a bleeding disorder! Platelet Function is a continuos process that starts when the  vessel  wall is injured. It is said that PSPD is a  secretion   disorder  that takes place in the Extension Phase of  platelet   function . PSPD is u...

Getting My daughter tested for Platelet Storage Pool Deficiency was a nightmare. The Dr's warned me it would be extensive, but nothing could've prepared me for what took place.   She has only gotten her blood drawn 4 times, but they're all experiences we just can't seem to forget..... Test #1: Time sensitive Platelet aggregate tests Getting her tested the 1st time was I'm sure similar to any parent driving 80 miles to an unknown hematologist to get their 2 yr old tested for a bleeding disorder......I WAS TERRIFIED. But I put on my brave face,  as they pulled out the 9 tubes they were going to draw her blood into and convinced myself this was going to be OK. I'll never forget the way Scarlett looked at me the first time they put that needle into her arm, it hurts my heart to this day.  She looked up at me with such hurt  and confusion as to why I would be letting her go through such pain.  I just held her tight and told her to sing her favorite songs with...

Scarlett started showing signs of bruising as soon as she started crawling. Bumps lined her forehead and were spread across her body unlike any 1 yr old I'd seen. Unfortunately due to my undiagnosed bleeding disorder at the time; I just summed it up to her having whatever I had.....which was a lot of unexplained bruises! Then unfortunately social services got called and we decided it was time to step into action.  Her pediatrician was one of the first people social services contacted, to which her doctor informed them of our concerns of her bruising the last few months and that we would continue looking into the problem. Social services dropped the case after talking to several people and doing a home visit to our already overly protected and padded home and concluded we were just a family with a bruising problem..... This obviously scared me into being proactive and finding out was wrong with us.  Due to my daughters young age, the doctors were originally waiting to do...

So I guess I should start with my story..... As a child I always felt like there was something wrong with me, but I wasn't diagnosed with a bleeding disorder until my 30's.  As any child being raised in the 80's, I endured many bumps, scrapes, bruises, and broken bones but mine took forever to heal and seemed to be there even when I didn't recall a particular event that could cause such an enormous bruise. Lots of questions where asked by family,  neighbors, teachers, etc. but the Dr.s nor I never could draw any conclusions. Fast forward, to my second pregnancy and my gynecologist (bless her soul) finally decided to take all my symptoms over 30 years seriously and sent me to Stanford to get tested! The results.....A very rare bleeding disorder-Platelet Storage Pool Disorder. So, now I'm here in hopes to share my story and raise awareness of this rare bleeding disorder.  I am a wife and mother of two beautiful kids- my daughter also has PSPD and my son could...