When I was younger, I often yearned for a fast-paced life. As a teenager, I rarely got to leave the house by myself. I coped by working on novels while locked away in my hot, stuffy bedroom. I loved writing in silence, but a greater part of me really wanted…
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It amazes me how people with a bleeding disorder just go with the flow, living their lives and accepting their routines as normal. They forget that what they do on a regular basis is nothing short of phenomenal. A little boy self-infusing is an amazing sight to see.
As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…
My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…
“We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with Hemophilia in November 2018. As a woman with hemophilia, I know about the struggle for legitimacy in a male-dominated disease space. What I…
I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of…
I surprised myself when I was in Montreal for a hemophilia conference in 2022. I decided to stay an extra day after the event to explore the city. I have to say, I found the most amazing gluten-free French pastry shop! The croissants and pain au chocolat were to…
The MacDonald home celebrates this Christmas season with a little more excitement than those holidays of the not-so-distant past. My youngest son’s health is the best it’s ever been, and we are in an excellent place. We have nothing to complain about. Life is good and the business…
I’m Bleeding, Believe Me
I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed by top medical professionals working for hemophilia treatment centers (HTCs) was alarming. I wondered why this is happening. Dominant…
I have vivid memories of visiting Grandma Jala. She lived in the little wooden house where she raised my dad and his three brothers after Grandpa died at a young age. The tiny house, worn by time, stories, joy, and sorrow, had a huge, adventure-filled yard. It had the flicker…