It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me. “So, how’s Jared? How’s his health?” Those who ask this question are often aware that Jared has hemophilia B and a seizure disorder. But not everyone knows how…
Lately, I’ve been reading a great deal of news about Hemgenix (etranacogene dezaparvovec), a one-time gene therapy approved by the U.S. Food and Drug Administration last November for adults with hemophilia B. Hemgenix, which also was approved by the European Commission in February, was found in…
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.
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…
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…
Online shopping is one of my guilty pleasures. In fact, as I write this column, I may have spent a significant fraction of the day swiping through hundreds of pages of items on my favorite shopping app. I don’t always end up ordering every item I find — I simply…
I’ve been sick these past few days with gastrointestinal issues. What began as a wave of nausea turned into an entire morning of vomiting, followed by a seemingly endless bout of painful diarrhea. I was confined to my bed, unable to get any work done, and subsisting on a diet…
February is traditionally known as the month of love. Yet while Valentine’s Day is over, the act of appreciating loved ones knows no time or place. My husband, Jared, and I have been together for almost nine years. Our relationship is somewhat unconventional — he has hemophilia and a…
Last month, I had the pleasure of meeting another “HemoWife” at an event organized by the hemophilia organization that my husband, Jared, is involved with. Her name is Anne, and she’s married to Jundee, who has severe hemophilia A. She and I had a quick chat, during…
Hello, hiring managers and human resources (HR) professionals! I’m writing this column to you, as the spouse of a person with disability (PWD). My husband, Jared, has severe hemophilia B and a seizure disorder, and we worked together at the same company for a year. I’ve also seen him…
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