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

I'm naturally a guilt ridden person, and having a child with a bleeding disorder enhances this feeling ten fold.  I'm constantly questioning if what I just said to my daughter is going to emotionally scar her for life and if I'm being a good enough parent.   For as long as I can remember I've been a "people pleaser" and felt like I needed to be "perfect".   I actually get physically nauseated when I think I've done something to upset a loved one and will stress about it long after the event.  But after I had Scarlett and we were both diagnosed with Platelet Storage Pool Disorder , my guilty persona really came in to play.   The thing I find myself stressing about the most, .......... is time.   There simply aren't enough hours in the day to accomplish everything I want to accomplish.  And I'm always feeling horrible that my children are getting the short end of the stick. I'm constantly trying to balance giving each child the at...

A recent trip to the oncologist and hematologist left me feeling a little defeated and scared about things that could go down in the future. I suddenly was finding out something as little as a tooth extraction or other major dental work would require a platelet transfusion and something life threatening suddenly was  . . .  " more life threatening!"  I'm supposed to see my oncologist quarterly to alternate between given mammograms or the Dr performing breast exams.  My sister and first cousin were both diagnosed with breast cancer when they were in their mid to late 20's and I'm considered to be a high risk candidate.  My oncologist has been trying to convince me to take the BRCA gene test since before I got pregnant with my second child. . . But after talking to my husband and discussing how big of a hypochondriac I am, we decided to hold off on taking the test until after I was done having children.  Now here we are, 3 1/2 years later . . .  and I'...

I know that I am different, that has left me feeling alone. The cure for my ailment, is still somewhat . . . unknown. I hate when I have to take my nose spray. It definitely ruins my day. The side effects are horrible, I don't care what anyone may say. They say that it's supposed to help me, but it make me feel dizzy and weak. And then I still have to walk around  with a bruise on the side of my cheek. I have nightmares still of the needle, I can still feel the prick in my arm. And my Momma whispering to me gently, "they don't mean to cause you harm." I see sometimes that it upsets her,  she cries and I think I know why. Momma's afraid I'll get hurt  and maybe even die. But I will not let this defeat me,  I get braver every day!  And pray that cures and answers  will soon come our way! Written by, Kari Peepe pspdaware@gmail.com www.pspdaware.com ©KariPeepe/atouchofscarlett.blogspot.com http://atouchofscar...

Knowing how to discipline siblings when one of them has a bleeding disorder has become more challenging than I expected.  I knew going into it, that limitations would have to be different in our house compared to others, but I never thought it would be so hard to enforce them or that I would suffer such guilt from it.  My children are 3 1/2 years apart and couldn't be more different in personalities.  My eldest Scarlett has a rare bleeding disorder and to no surprise has become pretty spoiled because of it.  She was the first grandchild on both sides and for 3 1/2 years was very used to getting things her way.  Then Walker came along. . . This cute little bundle of joy that had more energy and athleticism than most children I've seen.  Walker likes to run around and bang on things and my daughter for the most part likes to do art, read books, and play with her toys. So it's no surprise that their personalities clash. Ever since Walker was old enough ...

I often find myself wondering if my husband is secretly upset that he married someone with a bleeding disorder .  I knew growing up that I had a bruising problem, but being that I wasn't diagnosed with Platelet Storage Pool Disorder until I was pregnant with my second child it wasn't something me and my husband had discussed at great lengths before getting married and having children.  I had never taken it into consideration how my disorder would and could affect my husband and the generations to come. I guess I should start from the beginning . . . . My husband and I met when he was finishing his last year at Chico State.  On my first time visiting him for the weekend, I woke up to an accidental elbow to the face.  To a normal person it was barely hard enough to leave a mark, but thanks to my wonderful bleeding disorder, I woke up with a black eye and a new boyfriend asking what the hell was wrong with me.  So very early into our relationship I had to expla...

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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...