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

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...

I recently returned from St.Louis, Missouri where I attended my first HFA Symposium. Our conference took place at the beautiful  Hyatt in St.Louis under the arch.   It was there, I was able to make connections with other bleeders by sharing our stories. My husband was lucky enough to be able to join me and we were blessed to enjoy a wonderful blend of learning, advocating, and networking all while enjoying a mini-vacation to somewhere we had never been. This years Symposium had a large focus on Blood Sisterhood, which is a portion of HFA,  I'm truly passionate about. The number of women bleeders in this community is only growing and I believe we are on the brink of even more being diagnosed. Women are taking a stand and demanding better resources for a faster and smoother diagnosis as well as a realistic treatment plan. I was going into the weekend excited to networks with others and get females in the community what we deserved as patients and care givers. ...

This is a write up I did for BleedFree, Inc. back in January. . . Hello my name is Kari Peepe and I have Platelet Storage Pool Disorder.  Sometimes I feel like I should come with a stamp, that says WARNING! When my daughter and I got diagnosed with the rare bleeding disorder-PSPD. . . I've never felt so alone. The Dr.'s made me feel like our lives would change forever and that our daughter would never live like a "normal" child.  So I walked away from that first appointment picturing a life full of Dr's appointments, bleeding episodes, medications, and a lot of trips to the ER. Not to mention all my fears about the social impact this would have on her, once she reached grade school. But. . .  What I didn't foresee, was the friendships that I would find. My bleeder buddies have become such a huge part of my life, sometimes I forget that I've never even met these "friends" before. Friends I've known forever have slowly drifted away, an...

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'...

Since Scarlett and I were diagnosed with the rare bleeding disorder-Platelet Storage Pool Defect, I've made it my mission to share our story and spread awareness. Not only have I been working on my blog, but I've also been published on other web sites, foundations, etc. . . Here is a list to those links: I was recently interviewed for a piece in HFA Dateline 2015 Summer on why I became involved with the Hemophilia Federation of America An interview I did with HFA. . .  http://hemophiliafed.org/dateline/HFA_Dateline_2015_Q2_Summer/#p=26 I'm so honored to be a part of HFA 's INFUSING LOVE team. Here are the pieces I've written for them so far. . .                                                                                http://www.hemophiliafed.org/news-stories/2014/10/infus...

This year I can truly say our family embraced the gift of giving. As many people know Scarlett became a wish kid last year and was given the biggest gift of all... To have her one wish come true. . .  to meet the princesses!! Ever since we returned from our trip to Disney World . . . I've made it my personal goal, to start giving back more and to instill that into my children. Scarlett turning her letters into Macys We have been dropping off letters for Macy's Believe campaign for a few years.  But this year we put a lot more effort into it and decided to get the schools involved. I work at a preschool where I was able to collect 30 letters to Santa, and I volunteered in Scarlett's class one day and taught them about Make-A-Wish and Macy's Believe Campaign, where we collected 22 more letters. Through out December Scarlett encouraged anyone she could, to write a letter to Santa, and on the day we turned them into Macy's . . .  she had over 75 letters.  I...