‘LEMme Tell Ya’ About Me and My Extremely Rare Disease

‘LEMme Tell Ya’ About Me and My Extremely Rare Disease

“Dawn, what you have is extremely rare. It’s so rare that most doctors won’t see another patient with it during their entire careers.” These were the last words I expected to hear from my neurologist, Dr. Roople Unia, when she called to give me the results from my voltage-gated calcium channel (VGCC) antibody test.

These results finally came following years of progressive neurological symptoms that had perplexed multiple neurologists and specialists. I have Lambert-Eaton myasthenic syndrome, or LEMS. For my fellow LEMS patients who are curious, as most of us are, my antibodies are N-type with levels at 0.31, and I have the non-tumor form. I had a full-body CT scan upon my diagnosis, but my neurologist was confident and correct that my LEMS was associated with my multiple autoimmune syndrome.

Dr. Unia’s statement about the extreme rarity of my newly diagnosed disease pointed my life in a direction for which I had unknowingly been preparing. When we first sat down after my diagnosis, Dr. Unia said, “You are my first LEMS patient. We are going to learn about this together.” The combination of my background in life sciences, public health education, and pharmaceuticals gave me a leg up that most patients don’t have when diagnosed with a disease that they have never heard of — let alone one about which most of the medical community knows little. I became an active teammate with my neurologist to learn about my disease, research treatment options, and make decisions on which ones to pursue.

After my diagnosis of LEMS, I realized how obscure the disease was. I encountered blank stares from medical professionals when I said, “I have LEMS” or, “I have Lambert-Eaton myasthenic syndrome.” A doctor in the emergency room told me that he hadn’t heard of “Lambert-Eaton,” but that he’d heard of “Eaton-Lambert.” I found it lonely to be unable to have a conversation with anyone other than my neurologist about LEMS. Having an invisible illness with symptoms that come and go daily, and sometimes hourly, without a soul around you who “gets it” can be an unnerving experience. That is why I began writing.

My desire to educate others about LEMS and my other invisible illnesses led to the launch of my blog, “The Battle Within,” in my hometown’s newspaper. I also became a contributor for The Mighty. These opportunities allowed me to connect with LEMS patients from all over the country. I have spent time with many of them, and some have become my closest friends. A divine connection happens when we meet others who understand the four-hour medication window, the weak voice, and the severe weakness from overdoing it. Then, when we recover and can continue a few hours later, we don’t face judgment because LEMS patients understand and support each other as no one else does.

This column will focus primarily on my life with LEMS. I’ll share my backstories for those seeking a diagnosis. I take a cocktail of medications to manage my LEMS, and I will explain how adding various therapies to my regimen made a significant difference to me. However, I won’t recommend one medication over another. I will describe how each one of my experiences has been pivotal to my disease management. I joke and say that I’m like a high-voltage appliance as I need a three-pronged approach to treatment. I’ll also share stories of when I pushed myself too hard and fell flat on my face — literally.

I want this column to be one of hope. My friends are amazed when they see me, and I tell them, “I’m doing great!” Once I received a diagnosis, I could start treatment. I realize that not everyone with a neuromuscular disease has all of the options available to LEMS patients. While I have bad days, I know that with adjustments to meds, rest, and activity, better days are coming. I’ll keep smiling and be ready to live to the fullest on my next good day.

***

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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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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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8 comments

  1. Betty A Lasley says:

    Once again, Dawn, thank you for sharing our story. We are blessed to have you speak so eloquently for our community. Thank you and please continue your pilgrimage. There is always hope and as you know me well, let me say “tomorrow is another day and we will persevere.”
    Your compatriot in “life with LEMS”. Betty Ann Lasley

    • Dawn DeBois says:

      Betty Ann, Thank you! You have been my biggest cheerleader from the first day I published a single word about my journey. I feel blessed that our “Life with LEMS” brought us together. There is indeed always hope!

  2. Billy Ronayne says:

    Dawn you are Mighty! Your Voice and pen are reaching places and people whom other wise would never know about the trials and tribulations that LEMs patient share. Thank you for your good work! Keep it up…..

    • Dawn DeBois says:

      Bill, thank you. I’m so grateful that my pen has brought me in contact and built friendships with people like you and your beautiful Bride Barb!

  3. Jerry Hirsch says:

    Hi Dawn,
    Great article. Have been going down the same road, “Teaching” doctors that I come in contact with (including Neurologists) about LEMS! The Firdapse is a life savor. Taking it, I am just using a cane to get around. Without it, I was using a walker for short distances, and a wheelchair for a distance of 100 yards or more!

    Still, I’m not able to do many of the activities I was looking forward to doing in retirement (golf & tennis). The main reasons are balance and strength.

    ow, my question to you is… Was your I.V.I.G. treatment prescribed by your neurologist, or a different field of medicine? Also when you 1st started with the I.V.I.G., was it administered in a hospital, or an infusion facility (like the ones that do kidney dialysis)?

    Finally, is the I.V.I.G treatment covered my insurance?

    • Dawn DeBois says:

      Hi Jerry! Thank you for your feedback and I’m glad you are doing well with your meds! As for IVIG, it would be prescribed by your neurologist, if your doctor feels it would be a safe and beneficial option for you. It can be administered in a hospital, infusion center, or in a home environment with a nurse if you do not have risk factors against that setting. As far as it being covered by insurance, it would be something your prescribing doctor would have to do a prior authorization for. I cannot predict you if your insurance would cover it as each individual insurance plan makes their own decisions.

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