What a difference 4 years have made in fighting Lambert-Eaton

If you're new to life with LEMS, remember to maintain hope

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by Lori Dunham |

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When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, I thought our lives would never be the same again. Her life, and ours, seemed to come to a screeching halt. LEMS interrupted and restructured our daughter’s active life. Everything changed to accommodate her growing limitations.

Grace had to stop some activities permanently, mostly sports. Over time, some of these activities have been folded back into her life, although they look different now. These days, for instance, we incorporate horse therapy into her weekly schedule. We no longer ride horses just for the fun of it; there’s a greater purpose involved.

We’re almost four years out from her diagnosis, and I’m encouraged because our days are no longer as consumed with LEMS as they were at first. Grace has progressed well after finding a good plan of action, which includes Rituxan (rituximab) infusions every six months, as well as Firdapse (amifampridine), Mestinon (pyridostigmine), and Imuran (azathioprine).

Nowadays, our LEMS journey feels more like smoldering embers rather than a raging fire, but the disease is still very much a part of our lives. Grace lives with the struggles every day. But where our calendars were once filled with multiple doctor appointments, tests, and bloodwork, now we have a manageable schedule, with a visit to her doctors every six months. LEMS doesn’t consume our every waking moment as it once did.

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A mother’s messages of hope for those living with LEMS

The bright side of an annoyance

Grace recently had her six-month checkup with her rheumatologist, and I caught both of us annoyed at that interruption in our day. How ironic. One appointment in six months, and we were annoyed! How life changes. Things today are so much better than they were four years ago.

Looking back on the beginning of our LEMS journey, I never thought we’d get to a place of such routine and ease. LEMS at first brought us angst and chaos, as well as bouts of depression in both my life and Grace’s. We’ve lived through the worst of it and come out stronger.

LEMS has dragged us down physically and mentally. I’ve seen Grace fight this disease not only in body, but in spirit as well. Today, however, she’s overcoming its weight on her life. It took time, a whole lot of doctor appointments, treatments, medication, and counseling. But she’s winning this battle. Retreat is not an option.

So today, if you’re at the beginning of this journey and feel hopeless and alone, know that others have gone before you. They’re fighting a war that’s similar to yours. The mountain you face may seem insurmountable, but with time, things can get better. Most importantly, you are not alone.

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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