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
• 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
• Enjoys crocheting, gardening, and doing puzzles and word searches
• 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

“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
• 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
• 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
• 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 without LEMS
• Enjoys walking on the beach, bike riding, buying gifts for others, and baking