Our Daughter’s LEMS Treatment Allows Us to Enjoy Summer Again
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…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
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The need to make connections in the LEMS community
I’m a product of the 1970 and ’80s. We grew up with big hair, neon fashion, and the rise of music videos on MTV. I can remember sleeping on the floor of our family…
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Weighing the Pros and Cons of Mestinon to Treat LEMS Symptoms
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.
Why We’re Not Following Through on a Doctor’s Suggestion
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…
Knowing When and How Much to Share About LEMS
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…
The Heroes Living Among Us
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…
With LEMS, Activities Require a Cost-benefit Analysis
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…
Cheering On Those Running the Same Race as Us
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…
A Horse and a Donkey Remind Me of the Importance of Relationships
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…
Finding the Strength to Fight Another Day
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 Best Thing I Can Do as a Caregiver
I love taking care of people. I always wanted a family, and I’ve loved my role as a mother and wife first and foremost. However, our daughter’s diagnosis of Lambert-Eaton myasthenic syndrome at age…
The Fall That Brought Us Down to Earth
I have never been a fan of roller coasters. I learned early on that I like to keep my feet firmly planted on solid ground. Growing up in Pennsylvania, I recall many field trips…
We Appreciate the Unexpected Joys in Life With LEMS
There was a time when I thought I’d never smile again. For most of my life, my smile came easily. Through good times and bad, a smile never cost me much. I was…