Lately, my husband, Jared, and I have been working on home improvement goals. Since the pandemic lockdowns began, couples all over the Philippines have been boasting of their improved homes. With many employees now working from home, several people have both the time and the initiative to renovate and…
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I learned how to be a caregiver from my mother. Ruby Jane loved my children with complete devotion. While I made her a grandmother, she made me the man I am today. I observed her care for not only family but humanity. She spent years serving as the…
Sometimes a person must learn a lesson the hard way before making changes in their life. My youngest son, Caeleb, is 15, and he is discovering some truths about his body. Due to extensive damage in his right knee and ankle from hemophilia, simple things such as running and…
My husband, Jared, and I are fond of advocacy work. Our advocacy for people with chronic and mental illnesses inspires many of the things we do, including the way we run our small business. Our online jewelry store is our bread and butter, but it also is a way…
Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray…
People are required to earn a certification or license for numerous activities. To drive a vehicle, a person must secure a learner’s permit or driver’s license. To become a lifeguard, a person must go through training to earn a certification. Even working a part-time job in the food industry…
“Beep, beep.” I leap out of bed at 10 a.m. on a Saturday. My plans for the day include geocaching, a wonderfully nerdy hobby in which I hike through forests and urban areas to find hidden boxes. The GPS on my phone leads me…
I was recently browsing social media when I randomly clicked on a suggested article titled “34 Things You Need to Give Up to Be Successful.” As an entrepreneur, I get lots of suggested links to articles about success in business and life. I reflected upon what I had just…
When I was young, I learned how to be a caregiver for my grandfather. My mother, sister, and I lived with my grandparents for longer than I can remember. I had an incredibly unique relationship with my mother’s parents, particularly my grandfather. When I was about 13, he had a…
Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care. Over the years of raising two sons with…
Recent Posts
- Growing up before treatments for hemophilia were safe, part 2
- Routine dental work safe in hemophilia patients with clotting factor boost
- As my son stays busy chasing his dreams, pride and sadness mingle
- In sharing our rare disease stories, our collective light shines brighter
- New test may help fine tune care for those with acquired hemophilia A