My daughter’s LEMS diagnosis led her to find new passions

The disease brought many changes to her life, but they're not all bad

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by Lori Dunham |

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Change is inevitable. Life won’t look the same tomorrow as it did yesterday, that’s for certain. Those of us in the Lambert-Eaton myasthenic syndrome (LEMS) community know that all too well. We understand what it feels like to have our world upended by a rare disease diagnosis.

When our daughter Grace was diagnosed with LEMS at age 15, our lives changed fast. We had to adjust the way we educated her. We reconfigured our home so that Grace wouldn’t have to go upstairs to get to her bedroom. Instead of sports and hobbies, her calendar filled with doctor appointments and physical therapy.

Grace had to say goodbye to a lot of activities that had deeply enriched her life. Basketball was no longer a possibility. Horseback riding was impossible. Our Friday afternoon ice-skating date with friends quickly became a burden. The possibility of trying new activities like skiing and volleyball seemed to fade with each passing day.

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What Grace has gained

It’s hard to believe it’s been almost four years since Grace’s diagnosis. In that time, she has improved tremendously. LEMS, although still present, no longer dominates our days. Thanks to medication and treatment, Grace has been able to recoup some of what she lost.

We know some activities just won’t be possible for Grace. We have come to terms with that. But despite the loss, we have seen Grace grow in amazing ways — dare I say because of LEMS.

Yes, she had to give up some hobbies and sports. However, she’s begun to seek new opportunities that are quickly becoming passions.

For example, Grace has found a real interest in serving on her school’s tech team. What started as something to fill an hour of her time has allowed her to become part of a team again. She’s developed friendships and feels like she’s spending her time in a worthwhile way.

In addition, Grace has developed an interest in creative writing, baking, and art. Each of these new hobbies has brought a renewed sense of purpose and flair to Grace’s life.

There was a time to grieve all that Grace lost because of LEMS. Now, it’s time to celebrate the little wins and recognize the good that has come from a bad situation.

Have you found any new passions because of LEMS? Please share in the comments.

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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