Pain can alter people’s behavior, causing them to act out in unusual ways. People experiencing a severe degree of pain may hurt others emotionally or physically, often without meaning to. They might say demeaning things to their caregivers while in the throes of pain, even if they’re normally calm,…
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It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism.  “The hardest thing…
When I reflect on the unexpected detours my life took when my wife, Cazandra, and I had children, I cannot help but feel gratitude for them. They led me to where I am now. The author and teacher Joseph Campbell once wrote: “We must be willing to…
Columns
A Unique Perspective on a Season
Before having children, my definition of a season of life did not contain color. Everything appeared black and white. If there was a medical issue, it lasted for a little while and soon passed. Nothing remained for long. The most significant medical problem I faced was when I broke my…
Memories flooded my mind as I was going about my usual work today. I suddenly thought about my life before I met my husband, Jared, before my pregnancy, and before our daughter, Cittie, was born. I thought about my depression. And then I thought about our future as…
The new year is a wonderful time. To many of us, it’s a symbol of fresh hope and new beginnings. I greeted January with many dreams and the hope that they may come true. After an eventful series of moments leading up to New Year’s Eve, my husband, Jared,…
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Losing a Legend: Barry Haarde Passes Away at 52
The bleeding disorder community has suffered an unimaginable loss:Â Barry Haarde, the founder of the “Wheels for the World” campaign, passed away over the weekend. Haarde was just 52 years old. MORE: New documentary explores what it’s like living with a bleeding disorder Barry Haarde was born with severe…
Note: This story was updated Nov. 6, 2020, to clarify key scientific concepts. The gene-editing tool CRISPR/Cas9 enables a targeted gene insertion approach that may be superior to conventional gene therapy at restoring the activity of factor IX (FIX), the blood-clotting protein missing in people with…
Columns
The Truths About Being a Carer
When I’m browsing online, I often see posts dedicated to carers of people with disabilities, calling them “unsung heroes” for sacrificing time and convenience for their loved ones’ well-being. As the wife of a person with disabilities, I can attest that is often the case. I believe carers deserve recognition.