Columns

The last few weeks have been somewhat trying for Jill. She has been plagued with giant hive welts. They cover her arms, legs, and torso. Sometimes her lips or eyes will randomly swell. She jokes, “People pay a whole lot of money to have puffy lips.” She hasn’t been able…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. I participated in a few groups over Zoom because I have to be involved in every step of the journey. We have known about this conference for years because Jill’s mother tries to attend…

We live in Illinois, where the weather can be unpredictable. Some days we have perfect weather — 70 degrees and sunny — followed immediately by snow. We may not see the sun for days. When we moved here, we quickly discovered that you have to enjoy the beautiful days…

I am messy. I’ve always been messy. My desk at work looks like an explosion of papers. I love to read, so it’s not uncommon for my bedroom floor to have books scattered like leaves on the ground on a fall day. I also tend to buy the same product…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

My grandmother and my mom taught me how to cook. Growing up, I would make apple pies with my grandmother for the holidays, and I learned fractions by doing recipes with my mother. It amazes me how much of our lives is centered around what essentially is our…

We were settling down in the living room to relax after putting our daughter to bed for the night. I was sitting on the leather sofa with my legs curled up next to me. The setting sun was shining through the front windows, casting a warm glow across a wall…

The Huntington’s Disease Society of America held its annual conference in early June. Like many events these days, it was virtual, which made it super convenient to attend. I watched several sessions, including “Preparing for the Change That Will Come” and “Support Group for Caregivers.” I like to have a…

To this day, I have only talked to two younger people with Huntington’s who weren’t related to me. I know some resources could help me connect to others (like the HD Young Adult Conference), but I haven’t decided if I want to…