I’ve always had a hard time coping with the fact that it’s quite difficult for me to find a decent source of income due to hemophilia and epilepsy. Although government and private institutions say that they are inclusive of persons with disabilities (PwDs), the reality is that discriminations against…
The ‘I’ in Hemophilia
— Jared Formalejo
Jared Formalejo lives with severe hemophilia B and epilepsy. He is a writer, father, and advocate for patients and caregivers, and is married to Allyx Formalejo, who has a regular column on Hemophilia News Today, “HemoWife.” Jared explores disability, identity, and the cultural narratives that shape how chronic illness is understood and lived.
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It’s a struggle to balance life with two disorders. I need to take daily medications for epilepsy while also self-infusing to treat internal bleeds. I recently suffered a horrible epileptic episode. My wife, Cza, and I were walking with our baby, Cittie, when I felt a strong aura warn…
The topic of fatherhood is often an awkward one to talk about with other men. To an extent, I have that same sort of apprehension as I always find myself asking the question, “Am I truly ready to take care of a child?” I imagine others may find it difficult…
My condition, hemophilia, has always been an enigma for me. It’s been a huge challenge to my personal development, physical health, and mental stability. I wanted to believe that this disease was given to me for a reason. However, as the years progressed, I was wracked with hemophilia complications, and…
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