A Word From One of the Younger LEMS Patients

It has been just over a year since I began writing this column, “Stretcher-Bearers.” What a blessing it has been to become a part of this community and to be able to share information and words of encouragement. Since I write mostly about my daughter’s experience living with Lambert-Eaton myasthenic syndrome (LEMS), I thought it was time that everybody actually got to hear from her. 

I am always careful to divulge only what Grace allows. I am aware that it is her story I am writing about, along with my experience as her mom. I always want to be considerate of her private struggles. That said, I believe it is cathartic to express ourselves about the difficulties that we endure. I am happy Grace has the vocabulary and maturity to share from her heart. 

L: Do you remember recognizing your first symptoms of LEMS? 

G: Yes, I realize now that I started staying in my bedroom more because I didn’t want to go up and down the stairs in my home. It felt like I had weights constantly attached to my legs. When I was on the basketball court, all of a sudden the basketball felt heavier than usual. Soon, my whole body felt like it had a weight attached to it. 

What do you wish other people knew about you and LEMS? 

I want them to understand I have a disability, but I don’t want pity. I would like kids to be aware of the struggles others face and have compassion for them. 

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What is the hardest part of living with LEMS? 

A lot of it is hard. I don’t really know how to choose just one. I really dislike gagging. Sometimes if I eat too fast, or too much, I will gag. I really don’t like that. Also, I would like to be more independent and not have to rely on others so much. Depending on someone to go up or down stairs is frustrating. I don’t like that people have to help me and worry about me. I really don’t like it if I think people pity me for not being able to do things other people can. I don’t want them to look at me and see a disability. I want them to see me. 

What do you like about the LEMS community? How could it help you further? 

It’s a very supportive group and I like that it is such a small group that we see when a new person is diagnosed. I feel like people really know each other’s stories. 

I would like to get to know other kids that have LEMS as well. There are so few of us, it would be nice to be in contact with others. 

Has anything positive come from your LEMS diagnosis? 

It has made me more sensitive to those that suffer physically. I am more compassionate toward the elderly than most teenagers. Having a rare disease has made me mature quicker than some teenagers. It has also helped me appreciate my health.

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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.