Have you ever seen a German playground? They’re infamous on the internet for appearing dangerous in an age of “safe” play spaces. Unlike most playgrounds we know of today, which are padded, carpeted, and lack sharp corners, German playgrounds are industrial looking structures built on regular ground.
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As a woman with hemophilia B and von Willebrand disease, I understand the importance of awareness about bleeding disorders in women. How can you convince an ER doctor that you are a woman with hemophilia if they don’t believe such people exist? We do, even though the…
I must admit right off the bat that I’m a big fan of the musical “Hamilton.” I saw a production of it in Chicago and felt its energy flow through my veins like lightning. The dancing was nonstop, and most of the music was upbeat with a driving rhythm.
Trauma comes in all shapes and sizes. People often associate trauma with physical injuries, such as a horrific accident, amputation, or burn wound, but it can be caused by many other situations as well. For example, early childhood trauma can develop when kids grow up with an abusive parent. Trauma…
It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll…
My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…
I love assembling jigsaw puzzles. There’s a sense of satisfaction as the individual pieces come together to form a beautiful picture, and the essence of creation feels empowering. My thoughts turn to the many times when wrestling with my sons’ hemophilia felt eerily similar to working on a jigsaw puzzle.
When my boys were little, I dreamed about what their chosen activities might be — band, swimming, theater, or maybe soccer. I wanted to be a soccer mom, cheering on my sons from the sidelines and bringing orange slices for the team. My oldest son, Julian, did play soccer…
Last week, my husband, Jared, experienced a bleed above his knee joint. We were out on a day trip when he noticed the first symptoms. He felt a tightness in his knee, which he initially attributed to climbing several flights of stairs. It wasn’t painful for him, but as…
Through the COVID-19 pandemic, we became used to washing our hands frequently. As we held them under the faucet, we believed that disease particles too small for the human eye would be washed away, protecting us from catching the virus. Many medical professionals, in fact, told us that strict…
Recent Posts
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness