Alliah Czarielle, or Cza for short, is a life partner to a person with hemophilia and epilepsy. Her lifs dream is to enjoy a happy and contented life with her family, while pursuing her own passion for arts, crafts, entrepreneurship, and fine jewelry. She is a strong advocate for equal rights and support for people with disability, as well as people with mental illnesses, being a struggler herself. She lives in the Philippines with her husband, Jared, and their daughter, Cittie.
I’ve been struggling with my mental health lately. For the past two years, I’ve been juggling two or three freelance jobs at a time while also fulfilling my roles as a mom, wife, and carer to my husband, Jared, who has severe hemophilia B and a seizure…
Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard it as a legal arrangement — albeit a powerful and binding one that changes every aspect…
Dear Younger Self, Congratulations! You’ve found a person who’ll stick with you for life. What a blessing! Jared happens to have hemophilia B and a seizure disorder, and you’re going to be his carer. Big deal, right? I’m sure you’re feeling brave and unfazed now, as is…
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…
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