Columns

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,…

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…

You’ve been talking to prospective Mr. Wonderful for a few weeks now. You have a lot in common, and if he looks anything like his profile picture, you know he’s going to be some significant eye candy. You have started to flirt through email. You might even be…

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…

“I wish that I were normal,” my mighty warrior Caeleb said as we returned from his recent orthopedic appointment. I looked at him and chuckled. “Son, there is no such thing.” I didn’t mean to make light of his comment, but the truth is that “normal” is something that…

I am writing to you on behalf of all the women with a hemophilia mutation. My blood sisters have varying medical diagnoses: asymptomatic carrier, symptomatic carrier, mild hemophilia, moderate hemophilia, and even severe hemophilia. Their diagnosis is often linked to the philosophies of their hematologist or hemophilia treatment center.