A Word From One of the Younger LEMS Patients
It has been just over a year since I began writing this column, “Stretcher-Bearers.” What a blessing it has been to become a part of this community and to be able to share information and…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world, thanks to the U.S. Navy. She and her husband have three children and currently live in North Florida. At age 14, their daughter was diagnosed with the rare disease Lambert-Eaton myasthenic syndrome. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver to a loved one with a rare disease. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family.
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Steps I Took to Bring Joys Back Into Our Home
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…
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Finding Hope During the Most Wonderful Time of Year
As we enter what I consider to be the most wonderful time of the year, I reflect on why this season of giving is so magical. Does it really have anything to do with the gifts under the…
I Appreciate Resources That Enable Me to Learn About Rare Disease
I have come to appreciate the act of learning late in life. Until recently, I had taken for granted the ability to go to school, learn, and be educated in the field of my choosing. It was something I…
Seeking a Good Night’s Sleep With an Autoimmune Disease
It’s often true that we never really know how much we treasure something until we no longer have it. We can also tend to take things for granted in life by never truly appreciating what we have until it’s…
Tackling Common Misconceptions About People With Chronic Illness
“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” — Unknown I never gave much thought to those living with chronic illness until our family…
Finding the Rare Blessings Among the Hard Days
“All we have to decide is what to do with the time that is given us.” — J.R.R. Tolkien The most wonderful time of the year is almost upon us. In my eyes, the Christmas…
Weighing the Pros and Cons of Taking Another Immunosuppressant
We live only two hours from “The Happiest Place on Earth,” so it’s no surprise that we used to frequent Disney World. Each year, my children would push me to ride bigger and scarier rides. I’m more of…
Seasonal Changes Remind Me to Take Care of Myself
“I’m so glad I live in a world where there are Octobers.” — L. M. Montgomery, “Anne of Green Gables” October has always been one of my favorite months. I grew up in the beautiful Northeast of the…
A Service Dog for When Mom’s Not Around Every Day
My daughter, Grace, is an animal lover, always wanting to rescue the homeless or sheltered dog, the stray cat, or the random gerbil that needs a new home. So it was no surprise to me when she…
The Value of Supportive and Encouraging Relationships in Life With LEMS
It’s funny to think how life’s little moments can suddenly become momentous. Rarely do I start a day thinking it will be spectacular. However, when we intentionally look for the good flowing through our days, we can’t help but…
How Will an Appeals Court Ruling on Ruzurgi Affect My Daughter?
Most of us in the Lambert-Eaton myasthenic syndrome (LEMS) community have been following a court case involving Ruzurgi (amifampridine), the only LEMS treatment approved by the U.S. Food and Drug Administration for children under 17. In 2019, Catalyst…
Finding Ways to Embrace Inevitable Change
“There are far, far better things ahead than anything we leave behind.” – C. S. Lewis As the wife of an active-duty military member for 23 years, I have known my share of change. Usually, our family embraced a…
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