HemoWife - a Column by Alliah Czarielle

crab mentality, home, golden retriever, business, routine, childhood illness, unfair

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.

What do people with hemophilia actually need?

When someone we love is diagnosed with a chronic illness, our instincts often compel us to search for solutions: stricter routines, healthier diets, more discipline, or the willpower to push through. While self-help culture tends to praise these strategies, our family’s experience with chronic illness has shown that they can…

How to support a loved one with chronic illness

Living with someone who has a chronic illness has taught me much about perspective — both my own and that of others. While being married to someone who has hemophilia and epilepsy, I’ve seen firsthand how people often show that they care based on what they believe they’d want…

Embracing the holiday hustle and bustle in our own way

While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…

Understanding the nuances of hemophilia bleeding

After a decade of living alongside my husband, Jared, and his severe hemophilia B, I’ve learned that not all bleeding is as straightforward as it may seem. Bleeds vary widely, not just in size but in severity and impact. What might look minor can be excruciating, while larger bleeds,…

What we’ve learned about obesity, fat-shaming, and hemophilia

Fat-shaming is a widespread issue that can also affect people with hemophilia, especially young children. At its core, fat-shaming involves making negative comments or judgments about a person’s weight, which can lead to feelings of inadequacy or embarrassment. While these remarks may be intended to encourage weight loss or…

What does a minor cut do to someone with hemophilia?

One of the most pervasive and amusing misconceptions about hemophilia is that a person with the condition could bleed to death from a tiny paper cut. People often think that those with hemophilia must avoid everything that is sharp, which isn’t entirely accurate. Hemophilia doesn’t cause people to…