Skip to main content

Hemaware Article-Rare Finds

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 lives in Rohnert Park, California, with her husband and two children: Scarlett, now 7, and son, Walker, 3, who does not have the disorder.
After the diagnosis, Peepe began looking for other people with the same condition. However, searching multiple online groups turned up fewer than 20 families worldwide. What’s more, there’s no agreement among experts about whether it should be called a disorder, deficiency, defect or disease. “That’s one of the things I’m fighting for,” Peepe explains. “Plus, we’re all grouped together even though we’re not all deficient in the same part of the platelet.”

Although platelet storage pool disorder is becoming more recognized and accepted as part of the larger bleeding disorders community, Peepe says there’s still a lack of knowledge and support compared with people with more common disorders, such as hemophilia and von Willebrand disease. That’s one reason she is committed to building an online community, including an informational website. Peepe’s is the only one she’s aware of that focuses exclusively on platelet storage pool disorder. (See “Learn More” at bottom of page.) “It’s been neat to see the community grow and get more recognized over the past two years since I started making some noise,” says Peepe.

Focus on Four: Rare Bleeding Disorders Detailed

Platelet storage pool disorders
Platelet storage pool disorders (or deficiencies) are caused by problems with the platelet granules, tiny storage sacs within the platelets that release various substances to help stop bleeding. They result when platelet granules are missing, not enough are produced or they can’t empty their contents into the bloodstream.


Learn More

Comments

Post a Comment

Popular posts from this blog

2020, you suck! Her introduction into womanhood wasn't supposed to look like this......

2020, what a year. It seems appropriate that Halloween weekend during the pandemic would end up being when my little girl become a woman.  Friday October 30, 2020 It started at 12:35 pm on a Friday. Halloween was the next day and my son's school was having a safe-distance trick-or-treating event that we'd been anxiously awaiting to attend. This would be the first time either of my kids were getting invited to come onto one of their campus' since the school year started. So, we were dressed in our Halloween outfits and ready for a fun filled day.  Keeping on her brave face as we rush out the door. We were rushing out the door, late as usual. Since the pandemic... we've definitely taken advantage of having a minimal schedule and being on time hasn't become our strong suit. Scarlett came running up to me whispering “ Mommy Mommy, when I wiped there was blood. ” I scurried her back to the bathroom to the assess the situation and assured her she’d be oK. " This was
Post a Comment
Read more

PSPD 101- What is Platelet Storage Pool 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 help wo
Post a Comment
Read more

Give Kids the World Village. . .Go to your happy place-Scarlet's Make-A-Wish PART 5

When people say . . . "To go to your happy place". . .  I now have somewhere to go.   My name is Kari Peepe and I am the lucky parent of Miss Scarlett Peepe. . . We just got back from Give Kids the World in Florida and we are literally beaming and my jaw hurts from smiling so much from watching my daughter in a state of such pure joy for one whole week.   I want to cherish the feeling we had when we returned from Scarlett's Make-A-Wish trip . . .forever!  Scarlett was diagnosed when she was 3 years old with Platelet Storage Pool Disorder- a rare bleeding disorder which has left her with a life time of blood work, medications, restrictions and fears of life threatening situations.   As soon as Scarlett found out about Make-A-Wish, she was ecstatic but nothing could’ve prepared her or us for the experience that was about to take place and the joy it would leave in our hearts and our minds forever.   Prior to meeting Scarlett's Make-A-Wish team I had never even he
Post a Comment
Read more