Last week, much of the northeastern United States was hunkered down for yet another nor’easter. As snow fell on our northern neighbors, here in the South, we were enjoying spring-like weather. Many of the local schools are out for…
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We have all been thrown into the world of rare disease with varying circumstances. We walk different paths in regards to treatment and medication. However, because of the nature of Lambert-Eaton myasthenic syndrome (LEMS), most…
We are all on a journey in this rare disease world. Whether we have Lambert-Eaton myasthenic syndrome (LEMS) or care for a loved one who does, our lives have been touched by the debilitating and oftentimes life-changing…
Watching a loved one suffer is unbelievably hard. Watching your child suffer and lose function is practically impossible. In my view, suffering and heartache were never meant to be part of our story. Yet here we are. Each of…
These last days of summer blanket us with a thick layer of humidity and unrelenting sun. For us in the South, the end of summer is not marked by the turning of the seasons toward cooler weather, but instead…
Turning the page on the calendar is a reminder that the new school year is quickly approaching. Like most parents, I race to squeeze in all the dentist and doctor appointments I’ve put off in lieu of summer…
“Kind words do not cost much. Yet they accomplish much.” — Blaise Pascal It’s that time of year again. Every six months, my daughter Grace and I make our way downtown to the children’s hospital for her biannual…
Our world has changed over the past few years. Around the globe, COVID-19 has altered the way we all live. While we are no longer required to stay indoors and close our shops like in 2020, the world…
I’m a student of living life with intention. That means living with the end goals in mind. Whether they’re career goals, financial goals, or relationship and parenting goals, knowing the desired outcome helps walk you toward that goal. Some…
Living with a chronic illness, or caring for a loved one with a chronic illness, can often be overwhelming. When our 17-year-old daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14, everything else in life…
When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), she was just 14 years old. At that age, kids are just beginning to flesh out their interests and desires for the future. Grace was no different.
In the world of rare disease, it’s not uncommon for a patient to see multiple specialists. We all get quite adept at maneuvering through the red tape in order for a patient to be seen, diagnosed, and…
Summer is a few weeks away, and for those of us here in northeastern Florida, school is out and the temperature is rising. For the first time in years, I’m excited about the prospect of summer. I anticipate…
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