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

Being a bleeder means you need to trust yourself no matter what other people say.  Be aware of your surroundings  and what people say isn't always true. You can have fun. . .  but be careful. When you’re a bleeder don't think because you’re a bleeder that means you’re not special. . . you’re a rare type of person.  All bleeding disorders types are special  for who you are inside.  Just believe that what you are doing,  you can’t get hurt.  -Scarlett Peepe, Age 7, Platelet Storage Pool Disorder Kari Peepe ©KariPeepe/atouchofscarlett.blogspot.com http://atouchofscarlett.blogspot.com pspdaware@gmail.com www.pspdaware.com For more of my blog entries about our life in elementary school check out: College or Kinderten-Enrolling Scarlett in Elementary School:  http://atouchofscarlett.blogspot.com/2013/10/the-kindergarten-nightmare.html Scarlett's 504 plan-Kinder:  http://at...

Each year the Hemophilia Foundation of Northern California hosts a Crab Feed for friends and family of the bleeding disorder community. Scarlett and I attended our first HFNC Crab Feed!!! IT WAS A BLAST. Craft corner for the kids.  Upon arrival we had no idea what to expect and were pleasantly surprised to find a craft area set up for the children as soon as we walked into the door. The second room we walked in was where we checked in and where the silent auction was taking place.The silent auction area had tables lined with items to please all personalities. Baskets filled with tickets to local sporting events, massage packages, movie nights, items for kids, clothes, jewelry. . . and even vacation getaways. There was also a section set up for the kids to participate too. For a small amount of money we could purchase tickets for the kids to put in buckets in front of their own silent auction items (board games, lego sets, etc) and at the end of the night they all go...

Recently I was blessed with the opportunity to participate in a Womens Retreat in Santa Cruz, California.  The Female Factor group partnered up with the Women's Bleeding Disorders Coalition (WBDC) to co-host an evening of  food, laughter,   education and ended the evening with some gentle yoga!  Amazing group of women I headed off for the retreat early on a Friday morning. It was cold and rainy and no signs of sunshine were on the horizon, but I left my house eager for what the day had to hold and was ready for some girl time. I live about 2 hours from Santa Cruz and was picking up the president of WBDC on the way, whom was flying in from Texas for the event. . .  Selfie by the Board Walk We were both eager to get to Santa Cruz and see what was on the agenda for the day. We knew we would be meeting up with one of the co-founders of the Female Factor group whom had an amazing lunch prepared for us once we got to her house. We cau...

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...

 Saturday, February 6th at  The Winemaker's Pour House  in Livermore the HFNC introduced the  ‪#‎ FemaleFactor‬  group and the  Hemophilia Federation of America 's Blood Sisterhood program! Everyone's artistic juices were flowing.  Once we all gathered together and sat down to a wonderful spread prepared by the chef from The Winemakers Pour House . . . we started off the day with an informative speech about HFA's Blood sisterhood program. It didn't take long for us to realize we were in the company of some strong and amazing women that were ready to make some noise and see some changes. We had such a fun time. . . Bonding, relaxing, sharing laughs. I walked away feeling so amazing. It was truly a day I'll never forget!!! Love this gal. Laughing and Painting Meeting new friends:) Written by Kari Peepe kpeepe@gmail.com http://atouchofscarlett.blogspot.com www.pspdaware.com pspdaware@gma...

An excerpt from Hemaware: Rare Finds  Originally posted on 2/12/16  http://www.hemaware.org/story/rare-finds Kari Peepe The Activist All her life, Kari Peepe, 37, has known something was wrong with her health. Despite growing up prone to easy bruising and heavy nosebleeds, doctors couldn’t arrive at a diagnosis. She was tested for hemophilia in the 1980s and 1990s, but her blood tests always came back normal. When she bled profusely after the birth of her first child, her doctors still didn’t take her symptoms seriously. It wasn’t until 2011, at age 32, that Peepe and her daughter Scarlett were diagnosed with platelet storage pool disorder. It took a phone call to social services from a concerned citizen who was alarmed seeing a mother and daughter with so many bruises to start the process that led to the diagnosis. “In a way, it was a blessing because it finally pushed everybody to recognize that something was going on,” Peepe says. The preschool teacher/director ...

When my daughter and I first got diagnosed with a Platelet Storage Pool Disorder, I was overwhelmed and scared out of my mind. We were hearing terms we had never heard before, told  precautionary tales that the rarity of our disorder was going to cause and the  restrictions our lives would have. Looking back, These are the 6 Things I wish someone had told me when my child first got diagnosed with a bleeding disorder. .  1-Being prepared is the best defense.  Have a game plan.  I may seem over prepared but I've learned the best way for me to dodge anxiety attacks, where our bleeding disorder is concerned, is to feel totally prepared for any emergency. My most important form of defense is our Emergency Bag. I can't believe there was a time we went without it. I carry that thing everywhere, and there's rarely a time I don't feel like I have everything I would need in case of an emergency. In our backpack we have: LOTS of bandages (big, small, butterfl...