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

For the past 4 years my family has been proudly participating (alongside the Hemophilia Foundation of Northern California) in the National Hemophilia Foundations' Hemophilia Walk. Every $1,000 raised sends a child to Camp Hemotion, which Scarlett would be attending for the first time over the summer.  Each year our friends and family have come to support us and each year our group has gotten bigger. I'm truly grateful for all my friends and family that came to support us and hope we can continue this annual tradition. We had an amazing amount of friends and family walk with us this year.  This year I was also granted the opportunity to plan and take charge of the kids area. An area of our small local walk that needed some improvements and now had a willing candidate to take it on. I had been on the phone, emailing and staying in contact with other members of the walk committee for several months, so the excitement leading up to the day seemed to succeed all other walks...

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett. This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan.  1- What is PSPD? PSPD is as autosomal inherited disorder (like Cystic Fibrosis) PSPD is a rare autosomal inherited bleeding disorder. Unlike hemophilia which is an x linked recessive bleeding disorder. Platelet disorders fall into 2 categories Qualitative (abnormal function and/or structure of the platelet) vs. Quantitative (from having too few or too many).We fall under the qualitative category. Platelets are small parts of the blood cells that hel...

Dear HFNC's Family Camp attendees, I just wanted to say THANK YOU to all that helped take care of my princess this weekend. . . It was amazing to watch the community step up to give Scarlett the best camp experience while I was hauled up in the cabin taking care of her brother. I'm touched and forever grateful for all that you did. This weekend was the ever anticipated Hemophilia Foundation of N.California 's Annual Family Camp. My daughter and I attended last year for the first time and had a life changing experience. We had been looking forward to this years' ever since. Unfortunately, I'd be lying if I said the trip didn't start off on the wrong foot to begin with. Several days before we were supposed to be leaving, I was suffering though horrible pains and was questioning my own participation in the weekend. But I was ready to fight through it, in hopes of giving Walker the Family Camp experience he had been begging for, since his sister and I returned...

I'm a California girl and unfortunately was taught quickly that how I looked played an important role in where I stood on the social ladder. .  and going through adolescence with an undiagnosed bleeding disorder didn't make that any easier. Unexplained bruises covered my arms and legs. Bloody noses started for no rhyme or reason and countless other embarrassing bleeding episodes took place during my most impressionable years. All in a town where looks seemed to outweigh personality and character. Fast Forward to me now. A wife, teacher and mother of 2. I'm absolutely exhausted, working my butt off trying to balance being a present Mom, all while working enough to help get food on the table and the bills paid. And although I would like to say that my appearance is always on point. . .that would be a lie. I rarely have time or remember to put on make-up and do my hair, let alone moisturize, exercise, or go shopping for the latest trend. I must admit. . . I would LOVE to...

An interview I did with HFA. . . http://hemophiliafed.org/dateline/HFA_Dateline_2015_Q2_Summer/#p=26 For more stories on my journey with defending our disorder and becoming our own advocates please check out: The Jackass Whisperer, Dealing with other people's judgements:  http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html Help wanted!Seeking Dr who give a shit:  http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html Defending our Disorder:  http://atouchofscarlett.blogspot.com/2014/02/defending-our-disorder.html I am PSPD:  http://atouchofscarlett.blogspot.com/2015/04/i-am-pspd.html Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html Fear of the Unkown:  http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html

Each year the anxiety leading up to Scarlett's 504 and IEP plan seems to take over, but this year it was different.  I finally feel like the school understands the situation and is doing everything in their power to keep her safe while providing a social environment she can thrive in. This year Scarlett showed interest in coming to the meeting because she wanted to take part in deciding her restrictions. The look of astonishment on the nurses face as she described her "platelet bleeding disorder" and explained the steps and protocol to take when she gets injured was one I'll never forger. My heart filled with pride the more I heard her go on about her disorder-she was obviously a well educated little girl. Due to some minor head bumps Kindergarten year, followed by her enormous bump in the beginning of last year . . . left Scarlett's 1st grade of school with a lot of restrictions. She wasn't allowed on the playground unaccompanied by me (which I only coul...

A piece I wrote for  HFA 's Infusing Love . Originally posted on August 19, 2015 http://www.hemophiliafed.org/news-stories/2015/08/infusing-love-her-own-protector/ Infusing Love: Her Own Protector Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love August 19, 2015 The first few years after Scarlett got diagnosed with a Platelet Storage Pool Disorder (PSPD), I was sure she was never going to live a normal life. Being told your 2-year-old has a life threatening condition and that you would have to keep her safe and free from injuries, proved to be harder than I imagined. Throughout her preschool years, we were faced with countless trips to the doctor and emergency room over injuries that I eventually learned I could not prevent. Proof that Scarlett bruised immensely and the doctor’s constant fears of head injuries had me feeling like I was going to have to keep my daughter in a bubble for eternit...

A couple months ago, on a Friday night in the wee hours of the morning I woke up in the most excruciating pain ever. Stooped over in pain, unsure of what was happening. . . I rushed to the bathroom. A few minutes more of feeling like someone was stabbing me in my ovaries and I decided to try and just go back to sleep. I figured I was having another ovarian cyst erupt and needed to just lay down and let it pass. . . But as I was leaving the bathroom I suddenly got hot, and my vision went blurry . . . and then black.  I fainted. I had only fainted once before and ironically it happened in the company of a doctor. And to be honest I didn't even realize it had happened, so this kind of freaked me out. I woke up to my overly concerned husband towering over me, asking me if I was OK. He had woken up to the sound of me crashing into the door and falling to the floor. I, still being in so much pain AND in a state of shock and confusion, tried to move and literally couldn't get off th...

A piece I wrote for  HFA 's Infusing Love . Originally posted on May 20, 2015 http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ Infusing Love: Physical Fundraising Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love May 20, 2015 This is becoming one of my favorite times of the year to be a bleeding disorders advocate.  It’s the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted it’s first annual  Gears for Good Bike ride  from West Virginia to DC, to help raise awareness about bleeding disorders, all while raising funds for HFA’s financial assistance program,  Helping Hands.  Each year, more and more individuals have been joining in the fight to raise money for this important cause. And in 2014 HFA succ...