When I was in my early teens, a family member introduced me to the law of attraction. According to this “law,” thoughts determine the outcome of one’s life. Therefore, if your thoughts are positive, positive things will happen in your life. I was young and determined to try it…

The U.S. Centers for Disease Control and Prevention (CDC) is seeking input from people who live with pain, as well as their caregivers and healthcare providers to better understand values and preferences related to pain management. This information will help the CDC update and expand the…

At age 28, I received a diagnosis that changed the way I saw myself. Learning that I had attention-deficit/hyperactivity disorder (ADHD) felt like a missing puzzle piece finally clicking into place. Suddenly, everything that had once confused me about my life made sense: my struggles to stay engaged in tasks…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…

For the past few weeks, I’ve written about my youngest son’s hospitalization in Houston when he was 11 months old. In one of those columns, I shared about Caeleb’s complications from a bleeding episode because of his circumcision. Caeleb spent several weeks in the hospital and eventually had a…

My older son, Julian, and I share many interests. We are both musicians and sing the same voice part, lyric tenor. Many people who hear us sing together tell me that it’s difficult to determine who’s singing. Our voices blend as if they’re one instrument. Genetics has a lot…

In our marriage, my husband, Jared, and I are equals. He may have chronic illnesses, which means there are certain adjustments he must make to have a semblance of normalcy in everyday life. I have psychological issues as well. But we strive to be equal partners. Sometimes we are imbalanced.

I receive an email saying the test results from my second bone density scan are in. Shaking and holding my breath, I click on the link and sign into my patient chart. I am exhausted. As I continue to wait for insurance to approve a trial of my fourth factor…

Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…

A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…