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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.


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