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With so many injuries lately, possibly because of a lack of exercise, I found it necessary to finally learn the ropes of self-infusion. Self-infusion of critical factor is important for me to prevent and treat bleeding episodes. As much as I have wanted to learn the craft, I…

For the longest time, my son Caeleb being in a wheelchair was just part of the normal workings in my home. The constant bleeds that kept him immobile were in the forefront of my thoughts as I watched him struggle to get around. But after five years without bleeds,…

I am a woman with mild hemophilia. I was angry when I realized that I had gone years without proper diagnosis and treatment. Over the years, I have had multiple bleeds that would have healed more effectively with access to factor replacement products. Many people mourn…

The importance of keeping a consistent schedule cannot be understated. A solid daily routine can help you save time, be more effective, and reach goals faster. As a new mom and wife to a person with hemophilia, scheduling does not come easily. Most of the time, my schedule is…

You don’t have to look far to find people who are afraid of needles. There is something to be said about sharp, pointy things digging into your flesh. The process is not fun, and we endure it knowing that the medicine will fulfill its purpose. We hope to feel better…

I attended the Hope for Hemophilia conference last weekend and met some wonderful people. I delivered a keynote address and shared my story of raising sons with hemophilia and holding on to hope. It was a special experience and I am grateful for the opportunity. The day after…

I recently attended a national conference for women with hemophilia. Common themes emerged as I listened to women’s stories of life with bleeding disorders. The number of women dismissed by top medical professionals working for hemophilia treatment centers (HTCs) was alarming. I wondered why this is happening. Dominant…

Many in my millennial generation dread adulting. The idea of surviving in the real world without the comfort of a family safety net is daunting. Young adults who are barely scraping by can feel alone and isolated. I was thrust into the world of adulting fairly early. In our mid-20s,…

People with bleeding disorders face a variety of challenges. Healthcare access is a constant concern and covers myriad issues, including political and financial stability and regulatory and provider awareness. Most of us spend a fair amount of time educating and advocating for these issues. One thing we don’t often talk…

I often say that I wish there were a course titled “How to Be a Good Parent.” You would graduate with a diploma and the confidence that your book smarts would translate into perfect child-rearing. Nothing would hold you back. Unfortunately, that’s not real life. There might be training opportunities,…