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…
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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…
The Analysis Group has partnered with China’s Institute of Hematology & Blood Diseases Hospital (IHBDH) to create the first blood disease research platform in that country. The new platform, called the National Longitudinal Cohort of Hematological Diseases in China (NICHE), will store clinical data on more than 10,000 people…
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…
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…
We Never Stop Learning
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,…
When my oldest son was diagnosed with hemophilia, it did not take long for my husband and I to start researching. More than anything I wanted connection. We found our local bleeding disorder chapter in Houston and began the journey with these amazing people. I was excited to…
My wife and I met families with ties to the bleeding disorders community through our hemophilia treatment center (HTC). One day, Rita, the former chairwoman of our local National Hemophilia Foundation chapter, asked us to join the board of directors. I agreed, because who can say no to…
I’ve been struggling with hip bleeds lately. I’m in the middle of recovering from a bleed on my right hip, which may have started because I put too much pressure on it too soon. I’m frustrated that I’ve been bedridden so often these past few months. It’s hard…