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Let’s face it. This year contains one struggle after another. We continue to ask the same questions: “How do we beat this virus? Will I continue to be insured during layoffs? How will I afford quality care for my loved one in the middle of political, medical, and economic turmoil?”…

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…

When my husband, Jared, and I were dating, many of our friends thought we had the perfect relationship. We were snuggly best buddies, intimate and passionate lovers, and mentors to each other. It was a bond I could only describe as spiritual and otherworldly. I had never met anyone who…

We all live according to life lessons. Not every way by which we govern our lives proves useful or affirming, but the lessons still unknowingly exist. My goal is to identify the negative patterns that I relate to the world and change them so that my actions match my desired…

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 have seen it many times. When a woman in a family with hemophilia gets pregnant, some feel OK emotionally, but for many, it causes a moment of panic, and sometimes sheer terror. What have they done? They are so scared that they passed…

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…