Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…

There’s a stigma surrounding those who use wheelchairs. To most, they evoke pity: “Oh, how awful to be confined to a wheelchair.” Perhaps it’d be awful for the person making the statement, but is it awful for the person using the chair? When an older adult is in a wheelchair,…

If you’re active on the Internet, particularly in groups and forums regarding chronic illness, you’ve definitely noticed the term “spoonie” being thrown around. MORE: Although there’s no cure for hemophilia, there are ways that to manage the disease and avoid bleeding episodes. Spoonie is a term coined…

I watch my son put pencil to paper and cannot help noticing the change in his face. The tension from just a few minutes ago gives way to peace. The minute he draws the first line on the page, he’s transported into a world that offers him rest and spiritual…

Switching to Jivi (damoctocog alfa pegol), an extended half-life replacement therapy, from Kovaltry (octocog alfa), may help adults and children with severe hemophilia A experience fewer or no bleeds, according to a Canadian study. “Data from this study provide routine clinical evidence supporting the use of [Jivi]…

Prophylactic, or preventive, treatment with factor VIII (FVIII) replacement therapy for four years reduced annual bleeding rates by 91% for people with severe hemophilia A, a study from Taiwan reported. After switching from on-demand treatment to prophylaxis, patients also experienced a 90.8% reduction in annual joint bleed rates and reported…

Mother Nature was not kind to my area of Florida last year. First came Hurricane Helene, bringing widespread flooding. Just two weeks later, Hurricane Milton struck, unleashing high winds and another round of devastating floodwaters. The effects are still visible today: Businesses have shuttered, restaurants remain closed, and the damaged…

I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…

It finally happened. COVID-19 found me. After two and a half years of following the guidelines, I couldn’t outwit the virus. I had two vaccines and a booster on time, and I declined invitations. I wore a mask in Publix and Walgreens even when nobody else was doing it.

My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…