Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…

I have struggled with anxiety and depression since my early 20s. Fortunately, my mental health is in excellent shape thanks to medications and therapy. These two aspects of care are necessary for me to be the best person I can be, not only for my family but also for…

I’ve grown quite fond of collecting eyeglasses lately. Stay-at-home boredom compelled me to start a vintage fashion modeling hobby, and suddenly a necessary medical appliance became a means for me to express myself. I enjoy matching my eyewear to my outfits, and in the process, my collection has grown. When…

Fall has set in, and the leaves around us provide a colorful daily show as we creep out into the world. The endless pelting of falling acorns constantly startles. Is the roof caving in? Is someone banging on our front door? How many acorns can there possibly be up there?…

One day, my youngest son, whom we affectionately call “MacDonald the Younger,” and I flew to a hemophilia conference. He could not wait to see old friends, and I could not wait to gather with my tribe and learn about advancements in treatments for those with bleeding disorders. My…

There are some very fortunate people who do not experience illness. They often come from families who rarely even catch the common cold. Then, there are those of us who know all too well how illness can affect a family. My mother suffered from several chronic conditions when I was…

I am a staunch advocate of equality. From a very young age, I was taught that all people are valuable, regardless of their race, ethnicity, social status, gender, or health status. I was brought up to believe that human beings have certain immutable and inviolable rights. Eventually, I learned…

Acupuncture was found to be more effective for reducing chronic joint pain in hemophilia patients than transcutaneous electrical nerve stimulation, or TENS, the results from a small clinical trial show. “Any treatment that can decrease chronic pain should be considered and acupuncture may have something to offer,”…

Early in the life of our son “MacDonald the Elder,” we came face to face with one of our first major medical decisions: deciding which factor product to infuse. By the time our firstborn was 2, we had chosen our hematologist, survived a first bleed, and taken a trip…

Rarely am I the first to raise my hand in a class or give my opinion before others have shared. I do not want to look foolish or ask a dumb question. Most of the time, the question I held back was the same question others asked. I always seem…