Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
November, is National Caregivers Month. It’s the one day a year, set aside to acknowledge those who volunteer to care for family members, friends and neighbors who are managing health challenges and other disabilities. Not all superheroes wear capes. Some are managing medications, organizing medical records, scheduling doctor’s appointments and some superheroes are just […]
[glossary_exclude] I worry when he’s late coming home and I haven’t heard from him in a while. I worry when I can’t get a hold of him on the phone for hours. I worry when he boards a plane for a trip. I worry when we do any physical activity where there’s a possibility he […]
I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he […]
My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a ‘normal’ life. […]
How are you supposed to find time for yourself? The never-ending housework, cooking, homework, schoolwork, sports activities, meetings, volunteering, 40+ work week, can leave anyone tired. Add hemophilia to the mix with the supply ordering, delivery, bleeds, doctor appointments, missed school and work, and it can be downright overwhelming. Where can you insert “me” time […]
My husband has a bleeding disorder called hemophilia. Prior to beginning a relationship with him, I did not have an understanding of hemophilia and the intrusive nature it can have on someone’s life and marriage. My minuscule understanding of hemophilia only consisted of someone “bleeding a lot” if they had an open wound. It was […]
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