“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?” The…
The Forgotten Factor - a Column by G Shellye Horowitz
I cannot tell you how many times I’ve heard the term “Bubble Wrap.” A child with hemophilia is born: “How am I going to keep this kid Bubble Wrapped and safe?” A kid with hemophilia falls on the playground and bleeds: “I wish we could Bubble Wrap you…
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…
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…
