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…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,” the photograph…

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 love the months of October and November. Leaves change colors, and the air is crisp and cool. It also is the season when we take a moment to count our blessings. I am referring to the things that bring us joy. Sometimes in our chaos with chronic illness, we…