HemoWife - a Column by Alliah Czarielle

I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value most: living a full and happy life. Jared has two chronic illnesses, hemophilia B and…

First meetings are always awkward, aren’t they? Well, I have the perfect icebreaker: Did you know that my husband, Jared, has hemophilia? Most people I meet are taken aback by this. Those with a thirst for knowledge are often intrigued. How often does one meet a person with hemophilia,…

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…