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I’m often surprised by the general lack of understanding about chronic illness and rare disease, which reminds me just how important it is to share our stories. In doing so, we can combat common misconceptions. Many friends and acquaintances knew about our daughter Grace’s declining health and eventual…

This week marks a new chapter in our daughter Grace’s rare disease journey. A few months ago, her pediatric neuromuscular neurologist announced that he was leaving his practice, and we had our final appointment with him last week. When Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…

Most people who have faced a health crisis understand the relief of finally receiving a diagnosis. Once this happens, a plan of action can be put into place. When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at 15 years old, I was definitely relieved to know…

Every six months, my daughter Grace and I go to the children’s hospital for her Rituxan (rituximab) infusions. This has proven to be one of the most effective treatments for Grace after she was diagnosed with Lambert-Eaton myasthenic syndrome at age 15. The Rituxan infusions are usually preceded…

I am not a skilled photographer. Family milestones come and go, and I’ll forget to document them. Christmas will slip by and I won’t take any photos. The same goes for birthdays. I’d like to think I’m too focused on living in the moment to stop and capture it in…

New Year’s always prompts such optimism for the future. It’s as if the world pauses from the chaos of the year to welcome a more promising time. I’m certainly hopeful about what the days ahead will bring. I’ve lived through the previous year’s challenges and now wish for brighter days.

My husband says traveling is in his blood. He grew up overseas, so it was only natural that we would often travel to his “home” early on in our marriage. When we started having kids, we learned all the tricks of traveling with toddlers. Thanks to the U.S. Navy, we…

I don’t like surprises. Almost every Christmas, my husband and I end up sharing what we bought for each other long before we find the gifts under the Christmas tree. Along the same lines, I would much rather plan for and anticipate a vacation than be surprised with one. So…

When my daughter Grace was 10, she requested a taser for Christmas. I’m not sure what prompted this request or why she felt the need for one. Regardless, she did not find a taser under the Christmas tree that year. However, as she grew into a young teen, Grace continued…

Traditionally, November is when we give thanks. With Canada and the U.S. celebrating Thanksgiving in October and November, respectively, it’s a season when many of us turn our attention to gratitude. That’s even true for us in the rare disease community. We face many hurdles throughout the year; life with…