Podcasts

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 caring for her mother and approaches everything in the same way that she hopes her daughter can do for her one day. Jena discusses the importance of communication and that the goal for her mother is independence for as long as possible. 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, the proper diagnosis or the right treatment-this site can guide you to that next milestone.

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 talks about the history of NORD and the Orphan Drug Act and how NORD supports the rare disease community. Jill gives us insight into rare disease patient organizations and how they can support rare disease patients. Jill also speaks to ways you can get involved and raise awareness for rare diseases and what resources are available. And most importantly, how you can participate in Rare Disease Day on February 28th and join the millions of rare disease patients who are raising their voices and elevating awareness for rare disease support. LEMSaware.com was created to deliver relevant information, resources, and connections to patients and caregivers dealing with LEMS. Wherever you are, searching for the right doctor, diagnosis, or treatment, this site can guide you to that next milestone.

“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 in driving that mission. Romy also opens up about her own lack of awareness and understanding the disease that was shaping her life and what resources were available to her had she been given more information by her doctors in the beginning. 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.

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 efforts to reverse the effect it is having on your life and about the weight that can be lifted off your shoulders once you receive a diagnosis. Connor is a young father to three, an athlete, a husband, and a lawyer who is dealing with the impact of LEMS on his favorite activities, his ability to be present at family events, and his relationships. 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.

“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 about how his travels, careers, and how his life has changed since his LEMS diagnosis. Despite his regimented schedule, he hasn’t let LEMS slow him down too much or stop him from continuing his passions. Peter has had an accomplished career, is a veteran of the special forces, and is a loving family man. 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.

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 as a caregiver and the true power of the patient. Listen along as Anthony talks about the strength of his wife and their journey as they navigate life with LEMS together. 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.