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

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...

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

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 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...

A piece I wrote for HFA 's Infusing Love . Originally wrote on February 18, 2015 http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven/ Infusing Love: An Unexpected Haven Categories:  Adult Women ,  Community Voices ,  Families ,  HFA News ,  Mom's Blog: Infusing Love February 18, 2015 I’d be lying if I said my nerves weren't through the roof upon entering the gates to the Taylor Family Foundation’s Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. However, I was surprised. What I found was a group of people that made us feel welcomed, safe, loved, and most importantly heard. We were originally approached about going to a camp for hemophiliacs, at Hemophilia Foundation of Northern California’s holiday party. Upon hearing the suggestion, my first reaction was to say no. I have social anxiety and don'...

Yesterday Northern California was hit with one of the biggest storms we've had in over a decade. While other people were running around gathering flashlights, candles and batteries. . . I was checking Scarlett's emergency bag and going over all the different scenarios that could happen, if I sent my daughter to school, on the brinks of a natural disaster. It didn't take me long to decided that she wouldn't be going to school and I couldn't risk flash floods or down power lines being a reason I couldn't get to her, in case of an emergency. Days like this I'm reminded of Scarlett's bleeding disorder more than usual. My daughter and I have the rare bleeding disorder-Platelet Storage Pool Disorder, which leaves us constantly trying to get out of harms way and questioning the "what if's" all the time. I'm ALWAYS  worried, being a working Mom, that I'm not going to be able to get to Scarlett if she's having a bad bleed. Being a Ca...

Originally posted on October 15, 2014 on HFA 's website  http://www.hemophiliafed.org/news-stories/2014/10/infusing-love-taking-care-of-the-patient-the-caregiver/ Infusing Love: Taking Care of the Patient & the Caregiver Categories:  Adult Women ,  Families ,  HFA News ,  Mom's Blog: Infusing Love October 15, 2014 I don’t think I’ll ever forget the day I got the phone call — the one I had been dreading since my daughter was diagnosed with   Platelet Storage Pool Disorder (PSPD) . It was 10:30 AM on a Thursday. I was singing to the preschoolers where I work when my colleague brought me the phone. She had that look on her face–you know the one — I’m so sorry! It was Scarlett’s school. I knew she must be hurt. I immediately stopped what I was doing and reluctantly took the phone, frightened of what I was going to hear on the other end. It was the principal. “Kari? Scarlett hit her head. She ran into a pole in the hallway.” She went o...