LEMS Aware

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 exp...

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 throu...

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...

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 when she is having a LEMS-y day. Jena deeply understands the importance of empathy and patience when...

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 episode, we talk with Jill Pollander, the Vice President of Patient Services at NORD.  Jill t...

“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 the general population. Her goal is to reach the masses and she is using her experience and her passion...

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 what it is like to suddenly feel the impact of something out of your control despite all your best ef...

“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 working parachute, gravity and momentum take over. “ During this episode we talk with Peter Calore abo...

The start of new symptoms can be life changing for a patient, but they aren’t the only ones effected. Behind most patients there is a caregiver in some form, someone who is along for the journey, to experience the highs and lows and to be a cheerleader, note taker, medicine giver, and advocate when they are needed. In this episode, Anthony offers us an honest glimpse into what his role looks like...

New symptoms. Invisibility. Isolation. Being diagnosed as Rare. Advocacy. Building connections. Ashley Gregory and Price Wooldridge walk us through their journeys living with LEMS. Ashley was starting a career, whereas Price held years of broad experience when their diagnostic odysseys began.  They share the similar challenges they faced and how they have helped each other through them, despi...

Welcome to the LEMS Aware Podcast. We’ve been waiting for you. My name is Kevin Freiert, and I will be your host. Lambert-Eaton myasthenic syndrome, also known as LEMS, is a rare neuromuscular disease that can have a profound effect on a person's mobility and quality of life.  LEMS disrupts the communication between nerves and muscles.  LEMS typically causes severe debilitating and progr...