The famous Nigerian poet and novelist Ben Okri wrote, “Stories can conquer fear, you know. They can make the heart bigger.” In this week’s blog, a young mother shares her personal story about hemophilia, about overcoming fear, handling her emotions and learning about a therapy that could work for her family. She shares her story, to help others facing the same fears. We hope to bring you more such stories throughout the year.
ELOCTATE is an injectable medicine that is used to help
control and prevent bleeding in people with Hemophilia A (congenital Factor
VIII deficiency). Your healthcare provider may give you ELOCTATE when you have
Important Safety Information
Do not use ELOCTATE if you have had an allergic reaction to it in the past.
My name is Sara, and my 8-year-old son Evan has severe hemophilia A.
The circumstances surrounding Evan’s diagnosis are likely familiar to many other families in the community—a standard heel prick that wouldn’t stop bleeding, eventually soaking his newborn clothes. I remember the nurse quickly whisking Evan down to the nursery, and I watched as three, four, then five nurses dropped what they were doing and frantically tended to our baby over the course of the next hour. The doctor finally told me he suspected Evan had a bleeding disorder and gave a very brief description of hemophilia.
This was not the life I had envisioned for my family.
Fast forward sixteen months later—I had studied every pamphlet and book and memorized signs and symptoms of every possible bleed like it was my job. I kept on top of appointments and diligently brought Evan to the ER each time he knocked his head. And then it happened, my greatest hemophilia fear: a spontaneous head bleed. Hearing things like, “subdural hematoma, evaluate the need to drill, lucky to be alive,”—all of it was so surreal. I felt helpless watching my innocent 16-month-old fight for his life.
I somehow found it in myself to channel that fear and anger into fuel for managing Evan’s hemophilia. I forced myself to attend social events and conferences, and ended up making a great handful of friends who have become a part of my hemophilia lifeline. At doctor appointments, I began to ask questions without censoring myself in order to get answers I could understand.
I also began researching treatment options. By learning about ELOCTATE myself, I was able to work with my doctor to find the answers to my lingering questions, evaluate the risks and benefits, and make an informed, educated decision with our physician to see how Evan would respond to it.
Evan has been taking ELOCTATE for his severe hemophilia A since August 2014. He does typical 8-year-old things like riding his bike, running, or playing sports with his cousins. They’re boys so they want to tackle and hit. Now he knows he has to play two-hand touch and with the Nerf ball. His cousins have grown up with him so they’re used to it. They’re attitude is just, “Okay, cool. Let’s go play.”
Since starting on ELOCTATE, he hasn’t had any spontaneous bleeds. And he’s becoming more receptive to being involved in his own care.
I’ll always be a protective mom, but it means so much knowing I can count on ELOCTATE to help care for Evan’s hemophilia. I am not only grateful for the opportunity to share my experiences as a caregiver of a child with severe hemophilia A, but also to provide some wisdom, and, hopefully, some inspiration to a unique, capable, and fantastic community of people.
You can see more about Evan and me in our video here on the ELOCTATE website.
Talk to your healthcare provider about whether ELOCTATE may be right for you. Please visit www.ELOCTATE.com to read the Indications and Important Safety Information , as well as the full Prescribing Information .
This blog was sponsored by Biogen, for educational purposes.