On LEMS Awareness Day, let’s continue to grow our community

I remember the moment I realized our daughter Grace had Lambert-Eaton myasthenic syndrome (LEMS) like it was yesterday. It was a hot, summer day in Florida. I had sequestered myself on our outdoor balcony to look through her medical chart.

I hadn’t yet heard from Grace’s doctor after he’d ordered a bunch of bloodwork, so I was looking at the results in her chart.

Aside from the debilitating symptoms caused by LEMS, Grace was a healthy teenager. Her bloodwork looked flawless. Then, as I scrolled to the second page, the red numbers that indicate abnormal results jumped off the page.

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That was the first time I’d ever heard of an anti-VGCC antibody test. Grace’s results for this test were clearly outside the normal range. I immediately turned to the internet to research what the numbers indicated. I learned that this test detects specific antibodies present in people with LEMS. Hours later, the doctor confirmed the diagnosis over the phone.

That day on the porch I remember feeling so utterly alone. I’d never heard of LEMS. We certainly didn’t know anyone who had it. How would it affect Grace’s quality of life? Would she be able to walk, drive a car, or hold a full-time job as she grew into adulthood? I had so many questions and fears.

Stronger together

Over time, I found a small community of people who were also affected by LEMS. These caregivers and patients encouraged and educated me. They taught me how to advocate for my daughter and helped me ask the right questions. Had it not been for them, I would’ve continued this journey on a very lonely path.

Because this community helped me navigate such a hard time in my life, I feel vested in giving back and helping the community grow. My daughter is still young, and I want her to have the benefit of these efforts throughout her lifetime.

But my desire to see this community thrive goes deeper than my own needs. It is crucial for those who come after us, so that they don’t feel as alone as I did.

In the four years since Grace’s diagnosis, we’ve seen great strides being made to further awareness about LEMS for the collective good of our community. We now have a patient registry to collect data and assist in the diagnosis process for others. Our Lambert-Eaton LEMS Family Association is going full speed ahead in representing the LEMS community at various events throughout the year.

LEMS Awareness Day

Finally, 2024 marks a huge moment for the LEMS community. On March 30, we will celebrate the first-ever LEMS Awareness Day. On that day, we’ll stand in solidarity as we share our LEMS stories. By doing so, we’ll help to educate doctors and other medical professionals to properly recognize, diagnose, and treat LEMS.

We will raise awareness together.

Let’s use our collective voice for good as we come together to celebrate all that happens in our little LEMS community. In doing so, we’ll improve the lives of everyone living with LEMS and the caregivers who support them.

What activities do you have planned for the first-ever LEMS Awareness Day on March 30? Please share in the comments below. 

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.