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*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
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
Apresentadores:
Frequência de atualização:
every 83 days
Duração média do áudio:
28 minutes
Entrevistas com convidados
Tem patrocinadores
Inglês
Estados Unidos da América
13 episódios
desde 2 de Fevereiro de 2022
episodic
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Living with LEMS isn’t always obvious to the outside world—but that doesn’t make it any less real. Invisible symptoms like muscle weakness, fatigue, or dizziness can quietly disrupt your workday, your weekend plans, or even your sense of identity.
In this episode of The LEMS Aware Podcast, host Amy…
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The LEMS Aware Podcast is a new series created to celebrate and support people affected by LEMS, whether they’re patients, caregivers, or medical professionals. Hosted by Amy Grover, Executive Director of Patient Advocacy at Catalyst Pharmaceuticals, the podcast aims to shed light on the everyday r…
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…
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 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 diagn…
On this episode of the LEMSaware Podcast, we are joined by Jena, a caregiver to her mother, who was diagnosed with LEMS. Jena's mother now lives with her, and Jena discusses the challenges of being a caregiver to her mother and young daughter. The most challenging part of watching her mother age is…
In 2023, NORD (National Organization for Rare Disorders) will be celebrating its 40th Anniversary and the 40th Anniversary of the Orphan Drug Act. On February 28th, NORD will lead the charge on Rare Disease Day. A day in which anyone can get involved to raise awareness for rare diseases.
In this e…
“I was built for comfort, not for speed.” Invisible diseases can be just as hard to acknowledge and understand for the person experiencing as they are for those around them.
In this episode we talk with Romy about her big ideas for how to share the realities, and awareness of, Rare Diseases with t…
When you are young, active, and always on the go it can be hard to accept that something is suddenly happening to you. This episode gives us a glimpse of what it is like raising a family after being diagnosed with LEMS (Lambert Eaton Myasthenic Syndrome).
In this episode, we talk with Connor about…
“Recognize your limits but don’t limit yourself... There's a life lesson, maybe a metaphor in the airborne and parachute training that I went through. When something is new and difficult that first step is the hardest. Once you take that step with the right mindset and the right resources, like a w…
Aviso: O podcast e a arte incorporada nesta página são de Catalyst Pharmaceuticals, Inc., que é propriedade de seu proprietário e não é afiliado ou endossado por Listen Notes, Inc.
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