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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 treated. The first doctor we saw when our 14-year-old daughter,…

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 lazy days by the pool and long days at the beach,…

A rare disease diagnosis comes with many challenges. One significant challenge is the statistic that, according to some estimates, 90% of rare diseases don’t have a treatment approved by the U.S. Food and Drug Administration. Thankfully, the Lambert-Eaton myasthenic syndrome (LEMS) community is blessed to have…

I never thought much about the rhythm of our days until our daughter Grace, now 17, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14. Time seemed to crawl when my children were toddlers. My husband was often deployed with the U.S. Navy, leaving me to fend for myself…

When our 17-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14, we struggled to know how much to share about her health, and with whom. In some instances, such as at school or church, it was imperative that we discuss her condition so…

I have been surrounded by heroes much of my life. For the past 23 years, I traveled the world alongside my husband as he served in the U.S. Navy. I have been on flag-draped streets welcoming shiploads of sailors back to American shores. My 5-year-old son and I have held…

Like many others, our family is returning to a normal routine after enjoying an increase in activities, family events, and time with friends for the Easter holiday. I love the extra family time and the break from work. We do fun day trips we don’t normally have time to do.

Living with Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, or caring for someone with one, comes with many challenges. We often find ourselves within a vacuum because that very rareness makes information sparse. Finding others with the same illness and connecting with them are key to not…

One of the most positive experiences that has come from our 17-year-old daughter Grace being diagnosed with Lambert-Eaton myasthenic syndrome has been the opportunity to attend horse therapy with a nonprofit organization called Grace Under the Oaks. I have shared in the past the incredible improvements this therapy…

I remember the exact moment I realized we were facing a giant in my daughter Grace’s life. Barely a teenager, she had symptoms that eventually resulted in a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). The realization happened before all of the MRIs, the CT scans, the cancer scare, and the…