I’m not a hero for living with hemophilia
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly,…
, MA, PPS, has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family. She also has hemophilia A. Her advocacy work includes an emphasis on early diagnosis and care for females with hemophilia and strengthening diagnosis and care for all people with mild bleeding disorders. Shellye is a licensed school counselor and principal with over 30 years experience. She currently works for the University of Washington as a researcher in the Johnsen Lab. She lives in Northern California, where she and her dog, “Hope,” love to wander through the majestic Redwood forests. All opinions are her own.
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I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly,…
I meet a friend at noon at my home in rural northern California. We hop into my car and drive…
When I tell people I’m a woman with hemophilia, I’m often met with the same response: “Well, that is…
Me: “Hello?” Medical assistant: “Hi, Shellye, the doctor wants to see you ASAP to discuss your recent test results. She’s…
Two and a half years ago, I purchased a manufactured home in need of a few repairs. Truthfully, it had…
I suddenly felt wet when I shouldn’t have. I ran to the bathroom and began pouring blood into the toilet,…
I’ll open this column with a riddle for you. Question: How can you tell you’re at a bleeding disorders conference?…
“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that…
I cannot tell you how many times I’ve heard the term “Bubble Wrap.” A child with hemophilia is born:…
As a woman with hemophilia, one of the greatest challenges I face is being believed. This challenge is multifaceted.
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