My husband, Jared, is an avid eater. He’s especially fond of meaty dishes like pizza, barbecue, and steaks. He’d never pass up the chance to try a new restaurant, unique meal, or a different country’s cuisine. (No wonder he also loves to experiment in the kitchen!) There’s just one…
HemoWife - a Column by Allyx Formalejo
The power of music cannot be underestimated. Its universality has the ability to connect people across places and cultures. Many people also find music healing. They can find solace in lyrics and melodies that evoke pleasant emotions or that mirror their emotional states. Why does this happen? Music activates particular…
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,…
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…
