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

 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...