Embracing Our Differences Within the LEMS Community

Diverse treatment plans, symptoms, and coping strategies refute the 'normal'

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by Lori Dunham |

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When I started home-schooling my two youngest children, I was desperate for someone to give me a formula of what our school day should look like. What did I need to cover each day?  How much time should I spend on math? Reading? Should I be doing science experiments? A clear picture of what home school looked like in our home seemed hazy to me.

We experienced that same desire for a tangible formula after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). We knew she had LEMS. Now we wanted to know what that looked like. What was it like to live with LEMS? Would she be able to drive? Did people live physically active lives after a LEMS diagnosis? Thinking of her future, would this diagnosis affect her ability to have and care for children?

These were questions I wanted answered so I could frame my daughter’s life within the context of this life-changing diagnosis. What would her life look like now?

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Thankfully, we have a strong LEMS community through Facebook pages and the Lambert-Eaton News Forums that connected me with others within the LEMS community. My conversations with other parents of children with LEMS were such an encouragement. I sifted through conversations, digging for nuggets of what “normal” looked like for someone with LEMS.

I wanted to meet someone with LEMS so I could watch them walk. What did their gait look like? Some parents talked about their adult child with LEMS working in a restaurant. I just couldn’t see how that was possible when my daughter could barely walk to the mailbox at the end of the driveway.

I quickly learned there is no “normal.” Every person dealing with LEMS is unique, down to their treatment plan and how they exhibit symptoms of LEMS. Some run and play football while managing LEMS. Others manage LEMS while going to college. Many can walk miles and hold full-time jobs. Others use wheelchairs or have to stay at home. The one thing certain was that members of our LEMS community don’t look the same. Each person has a unique story and walk.

Over the years, I’ve learned a valuable lesson about home-schooling: Do what works best for your family. It took me years to apply that lesson to our daughter’s LEMS diagnosis as well. Do what is best for her. It may not look the same as someone else in the LEMS community. Her treatment might not be the same as the next person’s. However, we’re all in this together, striving for our best lives.

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.


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