I recently attended the first meeting of the Northern New England Myasthenia Gravis Support Group in Portland, Maine. The event was hosted by a pharmaceutical company to promote its new product. However, I didn’t let that deter me. I wanted to meet other local myasthenia patients like myself. The…
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 used to pass out at the sight of blood. As a toddler, I saw the blood from my mother’s suicide attempt. The images from that night will forever be 10-second flashbacks in my brain. Fainting was my body’s way of protecting myself from more trauma. As I grew older,…
Did you know that October is “National Disability Employment Awareness Month“? I hadn’t realized it until midmonth, though I’m legally disabled and employed as a writer. This year’s theme, “The Right Talent, Right Now,” jumped out at me as thoughts swirled in my head about having a month dedicated…
We’ve all been there. Our doctors suggest a new treatment for our rare disease, and after consulting with other patients through social media, we decide that the option is too scary. I did this with intravenous immunoglobulin (IVIG) replacement therapy. For more than a year, I held my neurologist…
This month’s “’LEMme Tell Ya’ Patient Stories in Their Own Words” features a Lambert-Eaton myasthenic syndrome (LEMS) patient I am grateful to call my friend. Price Wooldridge offers encouragement to newly diagnosed patients, and doesn’t hesitate to brainstorm with someone who is struggling with symptoms. His advice is…
One of the first Lambert-Eaton myasthenic syndrome (LEMS) patients I had the pleasure of meeting in real life was Romy Braunstein. Romy is taller than me, which is no small feat because I am pushing 6 feet. Her personality is larger than life, and her sense of humor has…
For the remainder of 2019, “LEMme Tell Ya” will feature a monthly series called “‘LEMme Tell Ya’ Patient Stories in Their Own Words.” The series will highlight Lambert-Eaton myasthenic syndrome (LEMS) patients whom I have come to know and admire. LEMS, as you will see, affects each patient differently.
I wasn’t diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) until my sons were grown. Upon his return from serving in the Navy, one of my sons remarked how happy he was that I could make weekend plans with friends instead of “just recovering each weekend after working all week” like…
In my last column, I shared wording that I’ve used to explain Lambert-Eaton myasthenic syndrome (LEMS) to my family, friends, and medical providers. However, I feel that I would be doing the LEMS, rare disease, and chronic illness communities a disservice if I didn’t admit that, at times,…
If you are like me, when you finally received a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS), you were excited to tell the world what has been causing your unexplained exhaustion, numbness, weakness, difficulty swallowing, and difficulty walking. I was ready to shout it from the rooftops! Because we have…
I was in my mid-30s when my painful, yet vague Lambert-Eaton myasthenic syndrome (LEMS) symptoms began to interfere with my daily life. I was unable to walk any distance, had widespread bone pain, and experienced extreme fatigue. My career had transitioned from public health education to pharmaceutical sales…
As a Lambert-Eaton myasthenic syndrome (LEMS) patient, you might not have identified with the experiences that I described in my previous column. However, I’m sure that most of you will relate to this one. LEMS symptoms are vague, and due to that factor, as well as the…