Welcome to my world, where it seems like I’m perpetually hosting a pity party. The past year has thrown more curveballs my way than I’d ever anticipated, leaving me caught in a never-ending hurricane of challenges. While I’m sharing my struggles here, I’m also keeping in mind the resilience of…
Search results for:
To help advance new treatments for hemophilia and other blood disorders, Pathway to Cures (P2C) has invested $250,000 in Anvesana, a company working to develop therapies based on RNA biology. “Anvesana is delighted to be working with Pathway to Cures to develop therapeutics that will bring life altering…
After writing a weekly column for over six years, I needed the break I’ve just completed. I’ve spent the past few months working to renew my spirit and consider what’s essential. I didn’t realize how desperately I needed to let go of some things. While my recent sabbatical is technically…
On Tuesday morning of last week, as I sat at my desk sifting through emails and attempting to plan my afternoon, my phone rang. I saw it was Julian, my oldest son, so I picked up the phone and steadied myself for our usual late-morning chat. I said hello in…
Recently, I came across an old DVD recording of a Fourth of July celebration on a hot summer day in Baytown, Texas. Many families had gathered on blankets and lawn chairs to celebrate with one another and watch the evening’s entertainment. The first star of the production was…
As the carer of my husband, Jared, who has hemophilia B and a seizure disorder, I’ve realized the importance of communication, understanding, and empathy. Focusing on these values helps us mature in our roles while balancing personal challenges, which for me include being a caregiver, mother, and a person…
During my teenage years, I vividly recall attempting to convey the severity of my menstrual bleeding to a male hematologist. I described my bleeding by giving examples of the products I used, such as “superplus tampons” and “overnight maxi pads.” He couldn’t relate. In a somewhat perplexed tone,…
The National Hemophilia Foundation (NHF) has changed its name to the National Bleeding Disorders Foundation (NBDF) to reflect its support for people with inheritable blood and bleeding disorders other than hemophilia. The new name includes a new visual identity and logo. The foundation also unveiled a new tagline…
In middle school, I faced bullies just about every day. I often experienced physical violence during the three years I attended what was then called Burbank Junior High School in Houston. The beatings occurred so frequently that my speech teacher allowed me to stay in her class and…
I’ve previously written about fellow Floridian Kayla Mack, a woman in her 50s who has Type 3 von Willebrand disease (VWD). Her severe bleeding disorder is similar to those who deal with severe hemophilia, as her blood clotting factor VIII levels are nearly negligible. Her von…