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…
HemoWife — Allyx Formalejo
Allyx Formalejo, or Cza, is a writer, entrepreneur, and digital marketer based in Marikina, Philippines. She is married to Jared, who has severe hemophilia B and a seizure disorder. They have a young daughter and two other “babies” — a dog and a cat. Cza herself is diagnosed with ADHD and bipolar II disorder. This allows her to offer a unique perspective on navigating various aspects of young adult life (e.g. relationships, career, and parenting) with chronic health conditions. In her free time, she enjoys collecting fountain pens, supporting small businesses, traveling across the country, and exploring local cafes. She continues to blog like most 90s kids did in the Internet’s early years, sharing her thoughts and interesting discoveries on her personal website, czaofalltrades.com.
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A recent study found that people with hemophilia who report better mental health may be more likely to adhere to their prophylactic treatment. It’s a compelling idea — that mental well-being can influence how consistently someone follows a care plan. But as I read through it, I couldn’t…
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…
Tattoos and piercings are artistically and sociologically significant in cultures across the globe. Throughout history, people have held varying opinions about each. But now that we’re a more global community, these skin-deep forms of self-expression have largely become mainstream. I have a couple tattoos, as well as numerous piercings in…
My husband and I have always found ourselves living in between places. The first apartment we moved to was in a hub between three cities. Now we live on the border between two cities. Just a few streets away from us is a sign that says, “Thank…
Our New Year’s didn’t go as planned this year. My husband, Jared, our daughter, Cittie, and I were supposed to book a room for a staycation and then go out to the city center to see midnight fireworks. However, that didn’t pan out because the room we had been looking…
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