Showing 2901 results for "hemophilia A"

Making Lasting Memories While in Isolation

As an introvert, coronavirus isolation is not problematic for me. I have plenty of projects to keep me busy. My graduate schoolwork is online, and the normalcy of school has been nice during these uncertain times. I hear about people who have a hard time in isolation, and honestly, I don’t…

Keep Your Swing in the Barrel

I met my husband on the golf course. Now, one of my greatest joys is watching my daughter learn to play at that very same course. It is where I feel most at home. The course is not a relaxing set of fairways we see on Sunday afternoon broadcasts with…

As Parents, We Are in the Construction Business

Raising children is like building a house. For those of us who manage chronic illness and other disorders, our floor plans may look a little different, but at the end of the day, we all want our loved ones to be strong and sturdy, and ready to face life’s…

Video: Bionews’ Social Media Campaign Highlights #WhatMakesMeRare

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

It’s Not Easy Getting Appropriate Care

Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers. Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in…