LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing
their experiences with LEMS.
When you’re living with Lambert-Eaton myasthenic syndrome (LEMS), it can sometimes feel like no one
understands what you’re going through. The rare nature of the disease can make finding connections difficult,
especially in the beginning. But for Tescha, Jamie, Mark, and Greg, building relationships within the LEMS
community became a turning point. Through shared experiences, honest conversations, and new friendships,
they each discovered that living with LEMS doesn’t have to mean living in isolation.
Tescha, LEMS Patient Ambassador
My journey to a LEMS diagnosis took eight years, and it was probably the most isolating and emotional thing
I’ve ever been through. I suddenly went from someone who was very athletic to needing to be on oxygen. I
thought, Is this my life? I was only 38, and no one could explain what was going on or understand how I was
feeling. Once I received my diagnosis, I finally had something I could treat. Just a few months later, Catalyst
connected me with other LEMS patients. The first time I met someone else with LEMS was a very powerful
moment for me. They could relate to all the things I had been struggling to explain to my spouse. It was
emotional, like I had finally gotten the healing I had been searching for. And soon I realized what I really
wanted was a connection that wasn’t about LEMS itself. Sometimes, just talking about hobbies is helpful
because you can learn how other people adapt. When someone newly diagnosed says that they can’t do this
thing that they love anymore, it’s about showing them that they can, just maybe a little differently. It gave me
hope and encouragement to hear from other patients that I could return to the activities that I’ve always loved.
Jamie, LEMS Patient Ambassador
When I was diagnosed with LEMS in 2019, I didn’t know anyone else who had it. I felt like I was on an island
until I connected with others through Catalyst. Talking to people who understood what I was going through was
such a relief. Now, I’m a member of two online support groups where we share our journeys and learn from
each other. After each session, I leave feeling a sense of strength and validation. It’s easy to focus inward, but
when I talk to other LEMS patients, it reminds me that I’m contributing and making a difference. As an
Ambassador, I’ve now found purpose in sharing my story and helping others feel that they’re not alone.
Mark, LEMS Caregiver Ambassador
When my wife Jamie was diagnosed, it felt like we were in no-man’s-land. It’s not that people didn’t care, but
they didn’t understand the disease, so they didn’t know how to care. It wasn’t until I met another LEMS
caregiver that I realized how important finding that connection was. Being a caregiver can be lonely. You can’t
rely on the person you’re caring for to be your emotional support because you need to be their support. You
have to make time to talk with people who understand. Otherwise, it’s easy to drift into isolation again. So, I’ve
learned how to reach out and be intentional about connecting with the caregiver friends I’ve made. Just making time to talk once a week for 10 minutes or sending a random text or photo is meaningful because I know that
they’re there.
Greg, LEMS Patient Ambassador
When I first began experiencing symptoms of LEMS, I was fortunate to have a strong support system of
friends, family, and a dedicated neurologist. But after my diagnosis, I was referred to Catalyst, where I was
able to connect with online LEMS communities and meet people whose stories were like mine. That was truly
amazing. Through these regular video chats, I’ve connected with LEMS patients from all over, sharing tips and
advice, and helping new people who join. It’s so comforting to know that you’re not alone. When you start
talking with others, you realize that even though this is a rare disease, there’s a whole world of support out
there.
Even Though Few People Have this Rare Disease, You Are Not Alone
Connecting with others doesn’t erase the challenges of LEMS, but it can make the journey easier. Through
shared experiences and community, these four Ambassadors have found purpose and hope. If you’re living
with or caring for someone with LEMS, consider reaching out and connecting with a LEMS patient community,
because support may be closer than you think.
© 2025 Catalyst Pharmaceuticals, Inc. All Rights Reserved. LEM-0584-1 November 2025