As I look forward to Rare Disease Day, it is not lost on me that five short years ago I hadn’t heard of it. When my first LEMS friend, Lisa Rountree, mentioned Rare Disease Day to me, I asked: “What’s that?” From left, columnist Dawn DeBois…
LEMme Tell Ya — Dawn DeBois
When Dawn was diagnosed with Lambert-Eaton Myasthenic Syndrome in 2016, she realized how lonely it was not having anyone to talk to that understood her illness. Her goal with ‘LEMme Tell Ya’ is to let that be a conversation about LEMS that other patients can look forward to each week. Dawn will share her own stories of being a LEMS patient and one who also deals with having an invisible illness along with multiple autoimmune diseases. Dawn’s prior work experience in pharmaceuticals and public health education is what led to her desire to educate others about her ultra rare diagnosis of LEMS. This desire, combined with her love of writing, led to her blog, The Battle Within. Dawn is also a contributor for TheMighty.com. When able to, Dawn volunteers for various pet rescue organizations. She has three adult sons and resides in Maine with her own rescues: a pug, Rocky, a beagle mix, Anna, and two cats, George and Wylie.
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Last in a series. Read part one. People often are sympathetic when they discover I had back surgery at age 13 to have a Harrington rod placed as a treatment for idiopathic scoliosis. They seem stunned when I show them pictures of me in a full-body cast after…
I have completed my first month on Hizentra (immune globulin), and I am ready to share my experience. (It’s important to note that I am not sponsored, paid, or endorsed as a product ambassador. This column is based on my experiences with Hizentra — other people may have…
I don’t think there is a rare disease patient on the planet who doesn’t harbor some hurt deep in their soul about how friendships change after a diagnosis. These changes were especially difficult for me. I was diagnosed as an adult, and my entire career was centered on people through…
People often comment that there aren’t enough days in the week or hours in the day. But I’ve found myself looking at a dozen more days in my month! How am I finding 12 extra days in a month? It’s simple: I have changed how my body receives immunoglobulin G…
Those of you who follow my Instagram or Facebook pages may have noticed that I was in Philadelphia last week. It was my first time actually leaving the city’s airport, which I have flown in and out of at least a dozen times in my lifetime. This trip…
It’s a new year and the beginning of a new decade. Photos have been popping up all over social media, showing how people looked 10 years ago versus now. Many are sharing their accomplishments over the last decade. When I first saw a friend’s list, I was a little taken…
This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now…
When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine. At my first…
When you take a plethora of medications to manage multiple chronic conditions, it’s only a matter of time before some of the side effects catch up to you. I’ve battled chronic migraines since college. I remember my first migraine hitting me while I was living in my freshman dorm. I…
When I checked into my last day of immunoglobulin therapy last week, I sat next to another patient in the waiting area. She looked over at me and said: “I’ve read all of your blog articles. It’s nice to have them, because you really do understand what we go…
Five years ago, Will Schuller was thoroughly enjoying his senior year in high school when he began experiencing symptoms of Lambert-Eaton myasthenic syndrome (LEMS). He was in the marching band, running 25 miles a week, and taking four Advanced Placement classes and one honors class when his life suddenly changed.
Spontaneity is what I miss most about my pre-LEMS life. No longer can I hop in the car and go to a concert, the beach, or a quick weekend away without planning around meds and treatment schedules. Even with the best-laid plans, I find myself pulling over to make sure…