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The first statistic I heard after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14 was that 50% to 60% of cases are connected to another underlying disease, particularly small cell lung cancer. This was a sobering statistic. It felt like the bad news…

Ebbs and flows seem to come with a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). I’ve equated that diagnosis stage to putting out a fire. Everything else in life seems to halt so that the fire can be put out. Finally, the fire is smothered as a diagnosis is…

One of the most consistent sources of joy in my life has been reading. So many of my childhood memories are wrapped up in stories. I remember reading my favorite book, “Wendy and the Bullies,” by Nancy K. Robinson, over and over again in the fourth grade. Something…

If there was a motto to be found among the Lambert-Eaton myasthenic community, it would be this: “When life gives you LEMons, make LEMonade.” This refrain encourages us to take the bitter parts of life and make something sweet out of it. The bitterness of a rare disease…

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 who have it have spent some time in physical therapy. Even…

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 symptoms brought on by this rare disease. Those in our community…

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 us has extremely hard parts in our stories. In my life,…

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 the return of the new school year. The heat and humidity…

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 fun. Since our daughter Grace was diagnosed with Lambert-Eaton…

“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 Rituxan (rituximab) infusion. This treatment has proven very effective in…