LEMS Patient Ambassadors

“Follow your instincts. Only you know you. Although we are all different, we have one thing that binds us together and it’s this rare disease, Lambert-Eaton myasthenic syndrome. But we also have something that keeps us going: hope.”

• Three-year journey to diagnosis
• Mary Ann had back pain as a nurse, but treatment provided relief for years—until the back pain returned in 2014, soon accompanied by trouble with walking, fatigue, and double vision
• She struggled to find answers and received multiple misdiagnoses, including Sjogren’s syndrome and myasthenia gravis, until eventually she was diagnosed with LEMS
• Mary Ann immediately researched the condition and found information on a potential treatment. She brought it up to her doctor, and he agreed that it sounded like a good treatment option for her
• Mary Ann enjoys crocheting, gardening, and doing puzzles and word searches

“LEMS is a life-changing diagnosis, and in a way, we journey through the five stages of grief. It’s a loss of normalcy but we can adapt to our new normal. Be your own advocate Do your research. Be nosy, ask questions, and educate yourself. Hope is the greatest gift of all—from hope grows love, peace, and faith, so don’t lose it.”

• Eight-month journey to diagnosis
• Barbara’s initial symptoms came on fast—her body seemingly weakening in a 20-hour span
• She struggled with feelings of depression and her faith after her LEMS diagnosis, until family and friends persuaded her to get help and keep fighting
• Barbara researched LEMS and worked with her doctor to the find the right holistic treatment plan for her
• Barbara enjoys sewing and crafting

“The outcome of my story is that you must continue to advocate for yourself. You might not get the answer right away, but don’t give up. We can’t take our health for granted. LEMS is on my mind every day, but I don’t let it consume me. Fight for what you need, and know that you are more than this condition.”

• Two-and-a-half-year journey to diagnosis
• Chip’s symptoms came on suddenly in the spring of 2012 during a family vacation
• He saw multiple doctors and got several misdiagnoses, including myasthenia gravis and mixed connective tissue disease, until Chip’s wife finally learned about a clinic that was able to diagnose him with LEMS
• Chip worked with his neurologist to find the right treatment plan for him, and learned how to live a life he enjoys, even with LEMS
• Chip enjoys golfing and watching baseball

“LEMS may affect how physically active I can be, but it also offers me the opportunity to actively increase awareness about the disease—and to remind people that ‘staying in the game’ can refer to attitude, not just physical ability.”

• Four-year journey to diagnosis
• In 2014, Ken noticed episodes of cramping and issue with his balance—affecting his work as a sales rep in the construction industry
• His symptoms worsened; he and his wife struggled to find answers, until he was referred to a new doctor who diagnosed him with LEMS
• Ken worked with his doctor to find the right treatment plan for him and a way to keep doing what he enjoys while pacing himself
• Ken enjoys hiking, camping, carpentry, and playing cards

“I try to always keep focused on the good and how far I’ve come. I am truly blessed and happy I never gave up the fight. So stay positive, only keep positive people in your circle, and never be too proud to ask for help. Be your own advocate and keep pushing to find what works for you.”

• Six-month journey to diagnosis
• Kristina was always a “go-getter” until she developed symptoms like dry mouth, blurred vision, and increasing fatigue
• Her symptoms kept progressing, even resulting in Kristina leaving her job, until a neurologist eventually diagnosed her with LEMS
• Kristina worked with her doctor to find the right treatment for her and to maintain a healthy lifestyle, which helped her adapt to life with LEMS
• Kristina enjoys walking on the beach, bike riding, buying gifts for others, and baking

“It doesn’t matter what you have or don’t have; listen to your body. You are the only one who knows how you feel, and you have to express that. I’ve been listening to my body for several years now, and I know to fight for what I need. My hope is that if we all advocated for our health, and get the word out about LEMS, more people can be helped like I have been.”

• One-year and five months’ journey to diagnosis
• Pat’s symptoms began as a bad taste in her mouth that eventually progressed to fatigue and difficulty walking
• She and her doctor searched for answers to all her symptoms until Pat was referred to a neurologist who diagnosed her with LEMS
• Pat found tools to help her keep moving and a treatment plan that improved her symptoms
• Pat enjoys gardening, reading, decorating, and shopping

“I wanted to share my story because I don’t want others to have to wait years to get a diagnosis like I did. I encourage people with LEMS to talk to others in the community because they understand what you’re going through. The biggest thing for me is to never give up—the outcome of any situation is never as bad as you think it’s going to be.”

• Two-year journey to diagnosis
• Tracey noticed that his legs were feeling weaker than normal and that he was having trouble balancing. Later that year, his face began to droop and he started slurring his speech
• After years with no diagnosis in sight, Tracey’s friends began to leave his side. He would continuously cancel plans because he was feeling weak, and his friends started to think he might be faking his illness. This encouraged Tracey to keep fighting for a diagnosis
• He was finally diagnosed with LEMS after receiving the results from a muscle biopsy
• Tracey discussed treatment with FIRDAPSE® with his doctor to determine what dosage was best for him

“Looking back on my journey, I’ve realized there are moments, big and small, where I’ve been the luckiest man in the world.”

• Devon is a teacher with two young children
• He began experiencing symptoms of muscle pain and weakness in 2015, which eventually progressed to fatigue and difficulty swallowing in 2018, when he was diagnosed with LEMS
• Devon’s symptoms made it difficult to teach in the classroom, and he ultimately had to alter his teaching style to find ways to remain engaged with his students
• Around the time his second daughter was born, Devon was really struggling with his LEMS symptoms and the various treatments he was following. He had to learn a new way to adjust to being a dad to a newborn and connecting with his daughters
• With the help of the Catalyst Pathways® program, Devon was able to start treatment with FIRDAPSE in 2022 
• Devon enjoys playing video games and taking gentle hikes

“It took me a while to learn that I don’t have to be a Superwoman every single day. It’s okay if I have a bad day or two. Have your bad day and then get back to the things you can do.”

• Sonya enjoys painting in her spare time
• Her year-and-a-half journey to diagnosis began when she noticed it was more difficult to stand up after sitting for long periods and her daily step count was falling
• She admits that part of the reason it took so long to get a diagnosis was because she was nervous about going to see a doctor about her symptoms
• Sonya eventually saw numerous doctors, but no one could definitely diagnose what was causing her symptoms
• When Sonya finally received her LEMS diagnosis, she was relieved because she had started
  to believe her symptoms were all in her mind
• Shortly after her diagnosis, Sonya’s neurologist went to a conference to attend a lecture about LEMS and FIRDAPSE

“I’m not so sure Kristina and I could have made it through this experience without the support from our loved ones. It made a huge difference for us. Kristina never gave up, and she fought as hard as she could to get the answers she needed. Her healthcare team poured their hearts and souls into her care, and we are grateful to have the relationship we have with them.”

• Caregiver to his wife, Kristina, who was diagnosed with LEMS in 2017
• Kristina’s symptoms included dry mouth, blurred vision, and increased fatigue
• Kristina was diagnosed with LEMS by a neurologist; she and Anthony worked together to help find the right treatment for her
• Anthony helped Kristina get around when she needed assistance, provided additional support to keep her spirits up, and eventually quit his job to help care for her
• Anthony enjoys spending time outdoors with this family, going to the beach, and attending Broadway shows

Staring down LEMS and cancer made me rethink literally everything. I’m glad that whatever time I have left in life will be spent with the people and things I hold most dear. Sometimes you get dealt a bad card, but the important things life has given me are not measurable.

• Four-year journey to diagnosis
• Dennis noticed his initial symptoms at work when he was unable to maintain his previous stamina and pace and experienced weakness in his arms and legs. He began to have issues with breathlessness, which led him to see his doctor
• While the LEMS diagnosis was serious for Dennis and his family, he felt that finally knowing his diagnosis gave him something positive too—a chance to treat it
• Dennis and his doctor worked together to advocate for the right treatment, even when that meant “jumping through hoops” for insurance approval
• A few months after the LEMS diagnosis, Dennis was also diagnosed with small cell lung cancer and has since achieved remission
• Dennis enjoys memoir writing and jewelry engraving, and he is an avid reader of ancient and modern history