As a woman with hemophilia, one of the greatest challenges I face is being believed. This challenge is multifaceted. First, I struggle to convince people that women can and do have hemophilia. Next, I have to explain that it’s possible for us to bleed like men with the…
The Forgotten Factor - a Column by G Shellye Horowitz
Today, when girls and women struggle to obtain a hemophilia diagnosis and proper treatment, I am angry. We need to do better. A timely diagnosis is crucial, as delayed testing or treatment can endanger women — especially if they are in an accident that causes bleeding…
“L’hitraot” is a word I learned while living in Israel. It is a gentle way to say goodbye, essentially meaning “see you later.” I am transitioning to a new job at a nonprofit organization, and this will be my last column here at Hemophilia News Today. It has been an…
What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief! I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and employment counseling, physical therapy, dental health, and school assistance, the HTCs seemed…
There are multiple types of medical trauma. A medical emergency can be traumatic. Chronic medical issues can be traumatic. Struggling to obtain a diagnosis and treatment is traumatic. I believe that one of the most consequential results of suffering medical trauma is the subsequent refusal to engage with medical professionals.
My heart raced and pounded as a bead of sweat rolled down my cheek. My chest was so tight that it hugged my heart, which seemed to be doing flips. What was happening to me? I wanted to run away. I wanted to stay and hide. I wanted to scream…
Needle. Vein. My eyes shift back and forth. Needle. Vein. Which vein is large enough to hit without blowing, but small enough to anchor well? Tourniquet, needle, vein, syringe. I hate infusing. I HATE this. Well, tonight I definitely hate this. Maybe I haven’t eaten enough, or perhaps it’s due…
When it comes to home maintenance and improvement, there are several types of people. Some look the other way when their home needs upgrades due to a lack of time, money, energy, or interest. Others coordinate with repair people who come in and do the necessary work. Do-it-yourself people look…
My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.
I gaze at the glorious sunrise as I take off in my red RAV4. On this particular trip I plan to make my way down from my home in Northern California to Los Angeles. My daughter and I will most likely push through the 12+ hour drive in…
Recent Posts
- I choose to share the power of my story with my blood brothers and sisters
- My son with hemophilia is living his dream — and mine
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study