We have looked forward to this moment for years. No longer do we have to find veins or stick a 2-inch needle into a port-a-cath under the skin every day. All that is required is a subcutaneous injection every two weeks. The future is here, and while we exude…
Parenting is not easy. And when you have a child with a rare bleeding disorder such as hemophilia, it is exponentially more difficult. Not only are you dealing with the typical ear infection, cough, or broken wrist, you also must consider how hemophilia plays into the mix. My youngest son,…
We grow up hearing our mentors — women we respect and love — regularly complain about menses. Periods seem to be a fairly universal inconvenience and bother. However, I believe there is a fine line between inconvenience and suffering. Your period should not make you miserable. Movements to…
The new year is a wonderful time. To many of us, it’s a symbol of fresh hope and new beginnings. I greeted January with many dreams and the hope that they may come true. After an eventful series of moments leading up to New Year’s Eve, my husband, Jared,…
My son couldn’t walk, and placing him in a wheelchair proved to be impossible. Internal bleeding into a knee or ankle forced my “stinky boy” to remain in bed. I hurt for him, thinking, “If only he could get in a wheelchair, he could see the world.” We wished…
With 2019 behind us, it’s time for everyone to start anew and welcome 2020 into their lives. It’s hard to be fond of 2019 considering the impact my chronic illness had on my life. I spent practically a third of the year on bed rest because of severe…
I received an email from a friend I hadn’t heard from in some time. She told me that her nephew and his wife just had a baby and he has been diagnosed with hemophilia. She had ordered my book to send to her niece and was hoping I would…
Recently, I was browsing the website of the National Hemophilia Foundation and came across a series of videos encouraging people with hemophilia to have regular testing for inhibitors. As I watched the videos, it occurred to me that women with hemophilia don’t talk much about inhibitors.
I’d been sick with acute respiratory troubles for almost a week. Not a minute had gone by without a sniffle or a sneeze. My sinuses had been painful and horribly congested, my throat inflamed, and my stomach upset due to the collection of phlegm in my digestive tract. (Don’t get…
My family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual…
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