Posts by: Lori Dunham

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 ... Read more

May 9, 2022May 9, 2022

Knowing When and How Much to Share About LEMS

Lambert-Eaton News Columns

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 ... Read more

May 2, 2022May 2, 2022

The Heroes Living Among Us

Lambert-Eaton News Columns

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 ... Read more

April 25, 2022April 25, 2022

With LEMS, Activities Require a Cost-benefit Analysis

Lambert-Eaton News Columns

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 ... Read more

April 18, 2022April 18, 2022

Cheering On Those Running the Same Race as Us

Lambert-Eaton News Columns

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 ... Read more

April 11, 2022April 11, 2022

A Horse and a Donkey Remind Me of the Importance of Relationships

Lambert-Eaton News Columns

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 ... Read more

April 4, 2022April 4, 2022

Finding the Strength to Fight Another Day

Lambert-Eaton News Columns

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 ... Read more

March 28, 2022March 28, 2022

The Best Thing I Can Do as a Caregiver

Lambert-Eaton News Columns

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 ... Read more

March 21, 2022March 21, 2022

The Fall That Brought Us Down to Earth

Lambert-Eaton News Columns

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 ... Read more

March 14, 2022March 14, 2022

We Appreciate the Unexpected Joys in Life With LEMS

Lambert-Eaton News Columns

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 ... Read more

March 7, 2022March 7, 2022

Our Daughter Has Stopped IVIG Treatment

COVID-19 Columns, Lambert-Eaton News Columns

One of the first treatments offered to our daughter Grace, now 16, after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was intravenous immunoglobulin (IVIG). Every three or four weeks ... Read more

February 28, 2022February 28, 2022

Our Daughter Is the Rarest of the Rare

Lambert-Eaton News Columns

From the start, our daughter’s life was harder than most. When we adopted Grace when she was just 13 months old, she was among the roughly 81,000 children adopted by ... Read more

February 21, 2022February 21, 2022

Our Experience Transitioning From Ruzurgi to Firdapse

Lambert-Eaton News Columns

In May 2019, the U.S. Food and Drug Administration (FDA) approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in children ages 6-16. Our daughter Grace, then 14, ... Read more

February 14, 2022February 14, 2022

Finding the Right Treatment for My Daughter Made All the Difference

Lambert-Eaton News Columns

The calendar dictates my days. Most years, our family marks the passage of time with birthdays, Christmas, Easter, and a highly anticipated summer vacation. But since our daughter Grace, 16, ... Read more

February 7, 2022February 7, 2022

Benefiting From Advances in Modern Medicine

COVID-19 Columns, Lambert-Eaton News Columns

This year has gotten off to a rocky start in our family. It began with a call on Jan. 3 informing us that my father had a heart attack. He ... Read more