LEMS Aware

By: Catalyst Pharmaceuticals Inc.
  • Summary

  • *Disclaimer: Opinions shared in this podcast may not reflect the opinions of Catalyst Pharmaceuticals, Inc. Let’s talk about rare diseases. The LEMS Aware Podcast lets you hear directly from people in the Lambert-Eaton myasthenic syndrome (LEMS) and other rare disease communities on topics that matter. We talk with patients and caregivers who want to share more than their story – they want to ignite conversations about LEMS and common rare disease experiences and needs. Join us as we talk about building community and how to discuss the hard topics in the LEMS Aware Podcast. LEMS is a rare neuromuscular disease that can have a profound effect on a person's mobility and quality of life. LEMS typically causes severe debilitating and progressive weakness in the upper legs and hips, making it difficult for a person to walk or even stand. LEMS affects approximately 3,000 people in the United States. www.LEMSaware.com and the LEMS Aware Podcast are brought to you by Catalyst Pharmaceuticals, Inc. The LEMS Aware Podcast is produced by Salem Oaks
    Copyright 2023 Salem Oaks, LLC
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Episodes
  • Transforming LEMS Challenges into Courage
    May 1 2024

    On this episode of the LEMS Aware podcast, we are joined by Patrick, who shares his challenging journey to receiving a LEMS diagnosis. As someone dedicated to serving others through work and church, Patrick struggled with suddenly needing to rely on others for help. His diagnosis process forced him to take significant time off, burning through his sick leave. Like many of our guests, Patrick's experience taught him the importance of being in tune with his body, recognizing when something feels "off," and persistently advocating for himself to seek answers about his health.

    LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS.  Wherever you are on your journey-searching for the right doctor, the right diagnosis, or the right treatment-this site can guide you to that next milestone.  


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    35 mins
  • Don't Let Your Diagnosis Define You
    May 1 2024

    On this episode of the LEMS Aware podcast, we are joined by Karyn. Karyn first started feeling her symptoms of LEMS 24 years ago, but wasn’t diagnosed until 2013. Living with her disease for almost 12 years before receiving her diagnosis helped her adapt to life in new ways, become more comfortable in her condition and gave her time to accept that a new normal is okay. Karyn’s frequent moves throughout her life, as well as her career as a social worker, enabled her to see her abilities and how they have changed as part of her life but not what defined her life.

    LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers who may be dealing with LEMS.  Wherever you are on your journey-searching for the right doctor, the right diagnosis, or the right treatment-this site can guide you to that next milestone. 

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    35 mins
  • Attitude is Everything
    Aug 12 2023

    In this episode of the LEMSaware podcast, we talk with Greg from his Northern Idaho home and the picturesque view filled with opportunities to enjoy some of his favorite hobbies.

    Greg takes us through life before and after his LEMS diagnosis, including several exciting career changes. Greg's diagnosis journey of self-advocacy and testing was fueled by his positive attitude and ability to keep pushing himself to enjoy what he loved most, even in small doses. Listen along as he discusses what adjustments he needs to make to continue the lifestyle he has always loved since his diagnosis.

    LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers dealing with LEMS. Wherever you are on your journey- searching for the right doctor, diagnosis, or treatment- this site can guide you to that next milestone.

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    32 mins

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